There's Always Rheum for Improvement

Moving On

2012-01-16T18:09:00.002Z

The past couple of weeks have been the hardest in my life so far. After nearly seven years I and my partner are going our separate ways. Things didn’t work out and although I am devastated I have to look at this as a new chapter in my life. The worst thing is I feel like I have lost my best friend, someone who knows me inside out and I really wanted things to work out. We just want different things and it has been hard to come to terms with when you imagined spending the rest of your life with someone. I know it’s for the best now, but it doesn’t make things easier as thoughts run through my head about eventually finding someone who will understand my condition and accept me for who I am. Having RA is not the most attractive thing in the world and I can’t help thinking that no-one will be interested because of the baggage that comes with it. But I am more independent and stronger than I have ever been so I know that I won’t have to rely on anyone. I want to find love not a carer. I wish things were easier but if it’s not working, there is only so much that you can fight for.

So, I am living alone for the first time. It feels strangely liberating and exciting, having to concentrate on me and only me. It seems like it has been about everyone else for so long. I know need to figure out what I want from life, in terms of career, relationships and the future. Where to start? The prospect of thinking about all these things is daunting to say the least but I will face it one day at a time, with the support of my loved ones who have been amazing through this difficult time. I am actually looking forward to the future.

When I say future, I don’t mean the immediate future as more frustrating news is that my left hip has now collapsed as my right did last summer. A replacement is most definite, it’s just a case of when and I have a feeling that will be pretty soon. The frustrating thing is that this means I’ll be out of action for a little while, again, when I really want to be moving on and keeping busy to get through everything else that has happened. But I suppose these things happen, for a reason I hope, so that once that is done and dusted I don’t have to worry about any more hips replacements for at least a decade! I meet with the surgeon this week to fix an op date. It’s true what they say, it never rains but it pours.

Happy New Year

2012-01-06T17:51:00.002Z

I hope everyone enjoyed the festivities over Christmas and New Year. It’s fair to say my holiday season was.... eventful. For the most part I was extremely lucky and very grateful to spend time with my family and good friends and I was spoilt with gifts. Christmas is a strange time as you feel under pressure to be happy and celebrate and when you are feeling quite low it’s difficult to put a brave face on the whole time. Proof that my immune system is well and truly screwed is that I still have a cold, four weeks after it began. Its nearly disappeared now thank the lord but it hasn’t been the best of times the last few weeks.

I received some awful news on New Years day about my dear Grandad, he is very poorly at the moment and I am really saddened by his illness. My thoughts have been with him every day making it hard to concentrate on anything else really including the year ahead. The good thing is the whole family have pulled together in support of each other at this difficult time so I can’t ask for more than that other than that my Grandad makes a full recovery very quickly. He is the kind of man you rarely see these days. Kind, considerate, loving and would do anything for his family. It is a blessing to know such a person let alone have him in our family so to see him unwell is awful to say the least. I know that he is strong and will want to pull through. It is his beautiful nature that makes me smile and cry at the same time, even today as we stood at his bedside whilst he struggled to talk all he could ask is if we were all ok... imagine that, someone so selfless that all they think of is the wellness of others. I really hope that I have at least some attributes of this amazing person who brings out the best in everyone around him.

Anyway, an update on hipgate part 2 is that the docs want to hold off as long as possible before replacing my other malfunctioning hip. I have good days and bad days with it but can feel it getting worse. I can’t think about it at the moment as I have too much going on, for starters I need to find some work to boost my income so that I can start planning for the future. This is the year that I would like to start thinking (at least) about saving for our own home and furniture and planning for a family. I discussed with my specialist only a few days ago about the consequences of medications when considering having a baby. I am a little more clued up on the whole process now, I know for definite that I have to stop all medications and be off them for at least 6 months before trying to conceive so at least with that in mind I can start thinking about when would be a good time. It’s a scary thought, being med free (as well as the actual having a child thing!) but I am assured that the doctors will do everything they can to keep me comfortable during that period when I can’t control my disease with medications so I guess it’s just weighing up how much I want children and when I am going to be ready.

I know from what I have read and the advice I have been given that the longer you leave it, the less chance there is of conceiving and this chance is lessened further with complications like RA so it does worry me a little that leaving it too long would make things a lot harder. I do feel slightly under pressure with having to plan everything as I know most people don’t plan to have children as such. Everything has to be fully thought out though when you live with a disease, from the moment you get up and decide what you are capable of doing today, to the moment you go to bed and wonder what you will be capable of tomorrow. I guess I always knew from diagnosis that planning for the future wouldn’t come easy anymore. But hey... when are things ever simple?

So, my days at present are pretty packed full with worry for my family, job hunting for perfect career, hours and salary and contemplating the future (i.e. how to buy a house and start a family with no money... that’s a tricky one... answers on a postcard please).

Please let your thoughts be with my wonderful family and I write this wishing my Grandad be safe and well and be back home with us very soon.

Cold Sore Christmas

2011-12-24T07:23:00.001Z

Oh what a beautiful face I must have right now. Currently trying out the Rudolph look with my bright red nose, due to constant blowing my brains out, and my eyes are nice and sunken in my head due to lack of sleep. To top it off I have received a fabulous Christmas present, one I’ve never ever had before... a delightful viral infection in the form of a shiny cold sore on my lip. Get me... I am on fire this Christmas.

The cold sore is getting me down, but that’s the reason it appeared most likely in the first place I am told. You can get them when run down, or it could be connected to the huge and overwhelming cold I have had this week. I can honestly say I haven’t felt this rough in a long time. I thought I might escape the dreaded cold virus this year as I have done pretty well in preparation (eating well, wrapping up warm etc) but I suppose having treatment that wipes out your immune system can really leave you open to anything. The cold has inevitably caused a bit of a flare up, but it’s manageable (with plenty of pain relief as always) so it’s not all bad.

I suppose the sacrifices I make to further my business, by standing out in the cold on a market stall for 12 hours with crippling arthritis can only lead to consequences. I decided to do the Christmas markets, with the help of my amazing sister by my side, to try and make a bit of extra money for the festive period and also to get in a festive mood I suppose. I forgot how hard working a full day is, I mean it’s not like I do it all the time. It really took it out of me, I am left exhausted and full of cold and with a nice addition to my face which means Christmas kisses are out of the question for me. Was it worth it though? Well in some ways yes, because it’s nice to get out and working, talking to people and of course promoting the business. But in other ways no, I unfortunately didn’t make my first million from a market stall (obvious really) so the long day and all the prep that went into it didn’t pay off as such in cash form. But I did enjoy spending time with my sister, being amongst the festive cheer of the public doped up on mulled wine and mince pies and it was almost like I had work colleagues again in the form of the other traders.

I know I am still experimenting with my capabilities and the limits of my condition. Sometimes I am not sure how far to push myself and its only clear I’ve gone too far the next day when I am all bent out of shape in pain. But we live and learn and I am definitely still learning. I think pain is much more manageable when it is for a reason. Before, when I was pretty much bed bound, I got so frustrated with the level of pain even though I wasn’t doing anything! So the fact I have achieved something before pain follows is so much better.

This Christmas I will be in recovery mode, making the most out of the family sofa, plentiful food and company. I will be dodging the cameras of friends and family best I can (I don’t wish to remember the addition to my face this Christmas... close ups are not an option thank you).

It’s Christmas Eve and I am definitely feeling joyful and thankful for everything I have, apart from the cold sore. I wish all my readers a very, very, merry Christmas and I hope it is pain (and cold sore) free for all of you even for a day so you can enjoy the time with your loved ones. I will be thinking of you all and hope that Santa brings you everything you dreamt of.

Merry Christmas x

In Loving Memory

2011-12-21T16:48:00.001Z

I received some very sad and shocking news late last week. An old friend and work colleague of mine sadly passed away after battling with breast cancer. She was so very young and left behind a beautiful 14 year old daughter. I struggle to make sense of the world when something like this happens. It reminds me just how short and precious life is and how it can end at any moment for any one of us. At this awful time, right before Christmas when everyone is celebrating, I can’t imagine what her poor family must be going through. When I needed a friend most after my mum was diagnosed with breast cancer herself, it was Lisa who was there for me. She listened to my worries and fears as we worked together and was often a shoulder to cry on. So how unfortunate that just 5 years later she should suffer the same fate and not win her battle as my mum did. I will never forget her kindness and strength, she was one of the loveliest people I have ever known and I write this in tribute to her and her family. I admit we haven’t had much contact since I left my job where she worked, but only recently when I found out about her illness I contacted her and expressed my deepest sympathy and get well wishes. At that time she was doing well, and I thought she would recover and what makes me even more sad is that she expressed her sadness at hearing I have been unwell too. I do wish that I had told her then how much I admired her and what a kind person she was to me, but I never thought for a minute Lisa wouldn’t be around anymore.

I know it’s a sombre subject but this weekend I have really been focussing on what I want out of life because who knows what is around the corner. We always take things for granted and just assume we will pass on old and grey years and years from now but as the story of my friend shows, we must appreciate life now and make the most of time with our loved ones. That is what I will be doing this Christmas, Appreciating how lucky I am to be around my family and friends. They mean the world to me and I intend to make sure they know it. I know we forget to appreciate things sometimes when we are feeling low and in pain but if you can, just remember life is far too short. I don’t mean you should rush your life and do everything right now, that would be silly, but I am now thinking about what the next few years can bring at least and what I want to achieve. I want to make sure I leave this world having all my boxes ticked (so to speak). Having children is next on the agenda and building a life for my family (except buying a house with no money may prove difficult). Anyways let’s leave on a happy note....

I wish all my readers the most wonderful Christmas. Enjoy every second of it and try to put aside your pain, even for a day, for your sake and the sake of your loved ones (who I am sure will hate to see you suffer this time of year). Remember those less fortunate than you and appreciate every smile, laugh and word shared between you and your family this year. Remember how lucky we are to have even one good day and enjoy all the good things that come with it.

Dear Lisa, rest in peace beautiful angel. Lots of love and support to your family. I will always remember you.

'Tis The Season

2011-12-12T13:27:00.001Z

Christmas is nearly upon us again and I can’t help feel how fast this year has gone. If you had told me at the beginning of 2011 that this year would bring the launch of my own business, a total hip replacement and moving home amongst other things I think I may have laughed at you. It seems strange that so much can happen in 12 months and it’s easy to see from this alone how much can change. This time last year I was contemplating returning to work and beginning to look for jobs that would suit my condition, which never actually worked out hence the business launch.

The past couple of weeks have been hard, though, with the biggest of flare ups in a while. I am still suffering but powering through. I am still not quite sure what the situation is with my other hip, some days it’s awful and others not so bad so maybe it hasn’t quite deteriorated as much as I thought, but I will be keeping an eye on it.

The arrival of Christmas has meant a busy time for my business, well busier than usual anyway. I decided to attend some local Christmas markets to help generate some income because my financial situation is dire at the moment. I really want to be able to start contributing towards the life me and my partner have and it’s so frustrating when it’s not possible. As I am sure some of you are in the same situation, not able to work because of RA or working very little so you rely on your partner financially, you probably understand my predicament. I have always been an independent person, determined to pay my own way in life but the simple fact is, without my partner I would be living with my parents again and unable to live independently. I thank him so much for this but words just don’t seem quite enough.

Anyway, my search for a little part time job alongside my business, so I can still do what I love but have the security of regular income too, has been unsuccessful so far. Once again it seems I have been given no chance to prove myself to employers and not even been offered interviews for any roles. It strikes me as odd that if someone in my position with plenty of work experience including running my own company can’t get work then where does that leave those of us who have RA that have never been given the chance to gain any experience. Are you struggling to find work too? It interests me how people juggle work and their condition, when do you decide that the time is right to start work again or for the first time with RA? How do you cope financially if you don’t work? It’s a daily battle for all of us anyway without thinking of these things. The only thing holding me back is consistency as I have mentioned before. The fear of flare ups and having to have time off worries me as I hate to let people down and explaining why I can’t do things because of my RA. Let’s face it; if you don't have it then you probably won’t understand how a swollen wrist, knee or fatigue will prevent you from going about your day normally.

Anyway, what I am trying to say is all I really want this Christmas is an opportunity. To be given a chance to supplement my teeny income with some stability and regular work. It would be great to interact with people in a working environment again too as I miss that terribly as I work alone at present. To have a plan for each week would bring a renewed sense of purpose to my life again and further my rehab back into normal life.

Hip Gate - Part 2

2011-11-29T09:56:00.001Z

I’ve had one of those mornings that should really be written off so that I can start all over again. Firstly lack of sleep again last night meant I awoke like a zombie at 6am as I couldn’t bear to lie awake in frustration any longer. I decided to go and bake some cakes however my car barely made it to the petrol station for lack of fuel (because of lack of funds). Then my card was declined (because of lack of funds). Once I got to work, it began to pour with rain so I got drenched getting out of my car. My knee gave way and I sank into a puddle and now I’m pretty sure my left hip has crumbled in the same way my right one did earlier this year. It’s only 9am.

Fan bloody tastic. I know I have said this before but I really don’t have time for a collapsed hip now. I am just starting to get my life back together following my hip replacement surgery in July. To have another replacement, which is undoubtedly the only way forward, would simply be too much to bear. I was hoping to make some decent money from my business over the Xmas period as I am running a stall at a local market (all very festive) and this requires a lot of work and preparation (which isn’t going to be easy with a broken hip).

Having to tell my partner that things have ‘hit the fan’ once again is unbearable. I think we have had enough to deal with so far this year. Why do we keep getting dealt this crappy hand? I want to scream. Of course, it could just be a bad day hip wise, but I have the familiar feeling in my hip that I had before in my right one after it collapsed. If it is the case, I am going to have to grin and bear it for the next few months at least because I need part time work, need to grow my business alongside it, and I have lots to do and focus on. Six weeks recovery at home after surgery is not an option and I am running out of patience and the ability to ask for help. If I am sick of it, no doubt those closest to me are too.

I was really looking forward to Christmas this year. The past couple of years haven’t been so perfect, because of one thing or another, but this Christmas was supposed to be the start of good things for 2012. I want to start thinking about the future, having a family, buying a house and settling into life as an adult. I don’t want to be held back by yet another broken part of me that needs fixing. Why aren’t things ever simple?!

I could really do with someone to talk to right now, a shoulder to cry on. Everything is getting to me and I am sick, so very sick, of being kicked when I am down. Hate to depress you with this rather sombre post, but I know a lot of you will relate to this feeling of being overwhelmed by bad luck. What’s worse is that I actually have something to look forward to this week, a night out with my friends which will be the first in a very long time. I was feeling excited about letting my hair down, catching up with my good friends and generally enjoying myself (and wearing heels). But this seems more and more unlikely as the pain increases in my hip each hour. I will still go, of course, as I hate to let people down but I know I won’t be able to fully enjoy myself because of the sodding pain. And did I mention how much I wanted to wear heels?! My outfit simply won’t work without them so I am taking the approach of no pain, no gain and I will deal with the aftermath on Sunday.

I am constantly reminding people that this is just life and there will be bumps in the road. Things will get better I know, but I wish I could take some of my own advice right now. I am not feeling so positive about the future as ‘hip gate-part 2’ creeps up on me. I will snap myself out of this low point in time (hopefully sooner rather than later as no one wants to be around the girl with a face like a slapped arse). Words of wisdom welcome.

Tomorrow

2011-11-17T17:25:00.003Z

So tomorrow is the second half of this round of Rituximab treatment. Not exactly like waiting for xmas but I am looking forward to getting it over with. I haven’t felt the best this time round with side effects and fatigue getting in the way of normal life the past couple of weeks. I can only hope it’s not as severe after tomorrow’s infusion. I am not looking forward to suffering of any kind for the next few weeks because I have too much to do. With xmas coming up, work and social events are piling in and it would be great to actually be able to cope with it.

The wrist isn’t getting any better, neither is my sleep to be honest but I suppose I am just used to being knackered and in pain constantly. My mood is low, so are my energy levels. I am currently sponsored by Red Bull, which doesn’t really make a bit of difference. Caffeine rarely helps the situation anyway when its fatigue you are suffering with. I just want to be able to enjoy myself at the moment, smile and really mean it.

I have been keeping up appearances and putting on a brave face but there is only so much of that I can do, as you probably know yourselves. However, as usual my family and my man have rallied round in support and have made things easier but you know me... I hate to rely on others all the time.

I think I could literally sleep for a week. Maybe us RA’ers should be able to hibernate for the winter? Although we would probably awake in the spring as stiff as a board and it would take until the next winter to straighten things out so maybe it’s not such a great idea. Or maybe RA could hibernate for the winter? Sounds like a dream.

In the mean time, I am ‘wrapping up warm’ and getting as much rest as possible, wise words from my Granddad (he’s the best). After a bout of man flu in the house, my poor fella has been suffering for 2 weeks now, I am surprised I am only just starting to see the signs it has clawed its way into my head. Waking up with a head full of crap, achy and generally looking like road kill seem to be the symptoms so far. I just hope it won’t put the nurses off treating me tomorrow; I’d rather not have to wait longer for Rituxumab. Drugs of choice this week are therefore Lemsip, plenty of painkillers and an abundance of caffeine. It’s no pick and mix but gets me through the day I suppose. Here’s to a weekend of wrapping up warm.

About Last Night

2011-11-08T11:43:00.000Z

Last night was one of the worst in memory. I have been suffering for a few days now since having the latest lot of Rituximab treatment. I recall feeling a little bit under the weather for a couple of days when I have had the treatment before but nothing like the last few days. It started with a pretty sleepless night the day of the treatment and, feeling fed up the following morning, I tried to busy myself with stuff around the house. Luckily I had the company of my superstar sister who was on hand to play nurse for the day. Even though I couldn’t really rest, I didn’t have much energy either, so my day was spent switching from small bursts of energy to do the washing up or make some dinner and followed by 2 or 3 hours lying on the sofa.

I had some work obligations to do the following day and even though I slept pretty well the night before I awoke feeling exhausted. I managed to pull myself together for the day because it was important, although I am not quite sure how I did it because I was in agony most of the day and on a completely different planet. I battled through anyway knowing that there was a hot bath and bed waiting for me on the other side. I was feeling quite low in mood by the time I got home and definitely not quite right in the head (my brain felt like cotton wool to be honest) but I thought a good night sleep would sort it out.

I battled with sleep through the night again but did manage to get a few hours in between the tossing and turning but when the morning finally came I was definitely feeling more than under the weather. I spent yesterday feeling absolutely horrendous but with no obvious symptoms. I can’t quite describe it, I wasn’t in pain as such or suffering with anything in particular, it was just like I had this big, dark, damp cloud wrapped around me that I couldn’t shift. I ached but not in usual places, my mood was incredibly low (spent the whole day crying at silly TV shows that weren’t even that depressing) and I didn’t have the energy to do anything. Every time I stood up my head filled with fog and I struggled to stand and prepare meals. So I pretty much switched between the couch, my bed and quick stops in the kitchen when I could manage it. All I wanted to do was sleep, but sleep wouldn’t come.

Praying that all would be well once I slipped into the comfort of my bed last night, I took my usual cocktail of pills and waited to drift off. After an hour of tossing and turning, it was clear it was going to be a long night. I hate night times; they are so unwelcoming with this disease sometimes. You pray all day for bed time to come because you are exhausted and then when it finally does, sleep is the most difficult task. It’s like your body plays tricks on you wanting you to sleep at stupid times when you have things to do during the day, yet when sleep is appropriate, your mind won’t play ball.

Last night was horrendous. I can’t put my finger on what was preventing me from sleep because I was exhausted. I had this weird uncomfortable feeling across my shoulders and neck which wasn’t painful just really frustrating. It made finding a comfortable position impossible. So I wandered around the house at unearthly hours, attempted to sleep on the sofa, the spare room (so I wouldn’t wake my boyfriend) and even tried the floor. Nothing worked and the frustration was unbearable. I wanted to scream out for help at one point but nothing was actually wrong, I just wanted so much to go to sleep. I don’t understand the concept of sleep, if you are so incredibly tired then why won’t your mind just let you rest? I don’t think I’ve ever been happier than when I heard my boyfriends alarm go off this morning. It meant the night of pure torture was finally over, even if I still felt horrendous.

Today I am still suffering with my flu like symptoms of having a temperature, aching body, strange tummy and generally feeling like crap. I am so upset because I have work to do and no energy to do it. I need to get out of the house but haven’t the strength or mental ability to actually put that into action. So instead I sit here, covered with a blanket and shivering (even though my house is like a sauna thanks to central heating). The one good thing is that after running out of painkillers at the weekend, I finally managed to get some relief this morning from the chemist. Not exactly a great achievement but for me it’s the best I can do right now.

After not suffering too much with previous Rituximab sessions, I am a little concerned that this is going to be the case from now on. I worry I will have to write off an entire week post treatment because of this frustrating black cloud that swallows me up afterwards. It may be nothing to do with the treatment at all, just a coincidence, but hard to see it that way when it has occurred directly after the infusion. I know everyone can expect side effects following medication but I wasn’t warned about ‘black cloud syndrome’ (as I call it). Another good way to describe it would be to think of your worse hangover ever, double it, throw in some confusion and lack of sleep and then you might know how I am feeling right now. The awful thing is that I didn’t even have the wild night out to blame it on.

So I will continue to plough through the fog that is my day and hope that tonight will bring sleep and tomorrow will be an end to this Rituxi-hangover. Oh and I have the next infusion in just over a week to look forward to. Super. Best not make any plans for the week after that one then...

Saving Grace

2011-10-27T08:17:00.000+01:00

Recently, someone wrote to me, responding to my earlier blog posts to suggest that my attitude towards life and my condition is not a positive one. Whilst I completely appreciate and welcome any comments about my blog, especially from those who are going through the same things, I wanted to put it straight that I am, in fact, a very positive person in my opinion, given my situation.

Yes, I may make sarcastic comments and moan about a few aspects of living life with RA, but on the whole I believe I cope with day to day life pretty well and my outlook on the future is one of hope. I suppose what I am trying to say is I apologise if reading this you have been under the impression that life with RA is awful. I am afraid it’s not, well not entirely anyway. Yes, there are lots of negative aspects of living with chronic disease, but on the whole I wouldn’t change a single thing about my life. I am the strong, ambitious and optimistic person I am today because of what I have been through. I know that without experiencing these not so nice things I would be in a very different place in my life right now, a place where I didn’t and don’t want to be. I am proud of who I am today and what I have been through has only encouraged me to try harder and hope for the best.

My ‘negative’ comments are simply shedding light on some of the not so nice things we sufferers go through to make it easier for non sufferers to understand the challenges we face. The truth is, I am pretty happy with my life, the things I suffer with only get easier as time goes on and you know what to expect. My reader who wrote and suggested that I be a bit more positive for the sake of younger readers who may fear the future is probably right. I agree it’s good to set a positive example to young people who may read this and worry about what to expect but isn’t it also important to tell the truth? Because, if nothing else, I am completely honest about my experiences and I don’t sugar coat anything because it’s my life. It’s what I am going through. It doesn’t mean to say you will face the same things; you may have a total different experience to mine. But on the whole we sufferers know that unfortunately, RA is not a nice thing. It’s hard and it’s frustrating, but the point I try to make is that life does go on. It may change course slightly, but life does go on and things do get better. Much better in fact, as you learn to cope with your condition and the limitations it presents. Of course, you might not see it as limitations, simply obstacles that may mean you have to do things differently than others or how you did them before.

I apologise to my readers if I have given you the impression that doom and gloom is all RA adds up to. I never intended to project this through my writing and I hope the majority of you see that. I am simply a person, retelling my story, in the only way I know how... honestly, openly and with a few sarcastic and light hearted sentences thrown in. That’s how I generally live my life anyway so I wouldn’t want to be fake and pretend to my readers that everything is glorious all the time. It’s not, and let’s face it life is not like that for anyone (apart from some very lucky buggers). I don’t want to preach and start banging on about life affirming or anything so I simply tell you how it is. I tell you what I do, how I do it and how I feel. If you are a young person, which I consider myself to be too, then hopefully you will ‘get’ where I am at. I am still trying to figure it all out myself to be honest so I hope you won’t judge me for having a bad day and ranting about it in a negative way. Sometimes that’s all the therapy I need, to just write it all down and move on. The difference is the things I write are left there for you to see. How you take them is down to you and I never read back through my posts because I don’t necessarily want to remember what I said or what I’ve done. It may bring back memories of things I have moved on from. Maybe one day I will sit down and read my own life story, or the last couple of years of it anyway, and be surprised or outraged by what I have written.

But as long as I know I have been honest and open and if one single person can relate to what I have said and know that they are not alone, then I have done what I set out to do.

(I just want to point out that this is not an attack on the person that wrote to me, just a response to why I think I am not a completely negative person as they suggested. I totally respect their opinion and understand where they have picked up on negative tones in my writing... but I know there are positive tones in there too. I am just not fearful of telling the truth because when I think back to my diagnosis I was scared and alone. If I only had an idea what to expect from an actual person who was actually honest rather than trawling through devastating internet sites and then getting the total opposite life affirming happy, smiley chat rooms where ‘everything will be OK’ then I might not have been so scared. I would know that there would be both good and bad times but I would get through it, and I’d be a better person because of it.)

Commitment Issues

2011-10-26T17:41:00.000+01:00

It’s 5.42am and once again I lie awake considering whether to admit defeat and get up after another restless night or try my luck for another hours shut eye. I can’t stand this. Probably one of the worst things about RA... the massively disturbed sleep pattern. I have had it probably since I was diagnosed and if I’m not awake because of pain or restlessness in my joints, I am awake because I am thinking about it. My wrist seems to be the main issue at the moment (and the ravin’ mad arms I spoke about last time).

I have got a lot on my mind at the moment I suppose. Work is top of the list. I am struggling because of my wrist and, as ever, worried about my finances and the future. I would like to look at the possibility of settling down a bit, getting our own furniture and home one day would be nice. At the moment that seems so far off because surviving off one wage is very difficult. I appreciate that my partner is so supportive of my condition he opts to cover the main living costs we incur from living together but it frustrates me that I can’t pay my own way. I always knew that starting my own business wouldn’t pay for the first year or so and I was willing to accept that but times just seem to get harder and harder. Everything’s going up and wages are not... well obviously mine is nonexistent but my partners wage hasn’t reflected the increase in living costs.

I know lots of people are in the same situation when one half of a couple are living with disease. They rely on the other person physically, emotionally and financially. It’s not fair but in most cases it can’t be helped. I have considered several times trying to seek some extra money through a little part time job but the truth is I don’t know what I would do and I am frightened about employment again. Working for myself means I don’t have to take time off for doctor’s appointments and all the other things that come with RA. I don’t have to explain to my boss why I am off sick for the four hundredth time in two years. I hate to let people down and that is what worries me the most. Committing to a job, even part time, means exactly that... you are committing your time to your employer on a regular basis and even if they did consider taking me on with my condition (as I don’t think I could lie about it or leave it unsaid) I am not sure I can commit to that. I never know how I am going to feel from one day to the next. If I wake up feeling bad or if I am in pain with what I currently do, I simply take a few hours to get right and work my schedule around my condition so that my work is always done, just at random times. I have to consider the possibility that I know further surgery is along the road somewhere, which means taking a large amount of time off if employed (probably with no pay either) and I am always scared of other things going wrong or unexpected flare ups or crumbling of joints (as I unpleasantly learned with hip gate).

How do people do it? How do you make the choice and the leap to return to work and be ready to commit to an employer? It’s such a difficult time to even find a job in this country but I know that if I was an employer I would prefer to take someone on that I can rely on rather than someone with a chronic disease so if I unfortunately feel like that then employers would too, right? It’s so frustrating when I hear that people are struggling to find work because I know there are jobs out there but its stuff they don’t want to do. The fact is, those jobs are things I physically can’t do. Part time jobs such as bar work, cleaning, manual stuff etc would be physically challenging for me so there is no point in me applying because I know I would struggle. But people who say they are desperate for money would go for these jobs to tide them over right? Well it seems not everyone wishes to go to this level to earn a living. I think I’d be quite happy doing a little bar job if nothing else came along, a sociable job that furthers your skills in customer service is how I see it. The kind of part time job I would love just never seems to be available (because the majority or roles I want to do are all full time). I love to write, be creative, organise events and many other things but you have to be willing to work long hours to get a job like that, or in the case of writing doors never seem to open for me.

I know that not everyone has a job that they enjoy doing, most people work to live and spend all week waiting for the weekend. I don’t want a job like that; I want to love what I do. I didn’t go to university for four years to end up doing something I hate every day. There should be more help for people with chronic disease, disabilities and any other health issues to give them the support they need to get back into work. The help is simply not there at the moment. The only ‘support’ people seem to get is letters telling them to get off their arses or their benefits will be stopped. Not much encouragement then.

The state of work and benefits and government support in this country makes me sick. It makes me physically angry that it is so messed up. Of course there is no one to blame, it’s all our own faults as we are told but who is going to answer to the situation of people who really want to succeed in life and earn their keep but they are not getting the help they need to do so? Simple steps to help are all it would take too. A little encouragement, maybe some form of scheme in place that supports the fact you may have to take time off so that employers are not left without your help and more physical support (adaption’s to equipment that are EASY to implement, I’ve been through the current system and its appalling, takes forever and costs employers a lot of money).

Anyway, rant over for now. Feels good to let it out, we really need to help each other and stick together I guess in these tough times. Or more people need to eat cake so I can eventually do my job full time and get paid a shed load and never have to worry again. I can dream I suppose....

Ravin' Mad

2011-10-20T19:14:00.000+01:00

I have some strange symptoms and goings on at the best of times but this takes the biscuit. The thing is, I can’t figure out what is causing it and why it’s started all of a sudden but it’s been going on for a few weeks now... every night. Also, I’ve started to grind my teeth so all in all I’m not getting the best night sleep (and I can’t be that easy to sleep next to either... sorry Josh). I haven’t changed my medication recently or had any other significant changes I can think of so the mind boggles. I have been getting pain in my wrist but that doesn’t explain the other arm going at it all night.

I don’t sleep at the best of times, for one reason or another. Whether its pain and discomfort, most nights, or things on my mind, the rest of the nights, I cannot remember the last time I had a decent night’s sleep. Probably about a year before all this started happening (so I haven’t slept properly for about 4 years... perfect). I have had to try and catch forty winks in the afternoon occasionally but the amount of caffeine I drink throughout the morning so that I can function on barely any sleep keeps me buzzing through the afternoon making it hard to relax. Maybe the caffeine has something to do with the raving mad arm syndrome, vicious circle though as without sleep I need some sort of caffeine fix to join reality each day. I do need to curb my caffeine addiction though, I think I am relying on my red bull cans and cups of tea far too much at the moment and it doesn’t really help because I’m still tired I just have a strange constant stream of energy buzzing through me (so really it’s like sleep walking). I’m pretty sure I resemble a zombie at present (nowt changes there then).

I received some results today from the x-ray I had on my left wrist, it’s pretty knackered. There are some signs of change in the bone, down to RA no doubt so it’s probably only going to get worse but with the major surgery on my hip already done this year, my doctor is reluctant to make me go through more surgery unless it’s absolutely necessary. I appreciate that but I don’t know how much longer I can put up with this limp, lifeless, aching thing attaching my hand to my arm. It’s not really doing anything or of any use to me at present which is making my job difficult (try rolling out icing to cover several wedding cakes with a knackered wrist). But I suppose it saves me having to have more work done at the mo (I can’t really deal with any more time out in recovery, six weeks after the hip op was bad enough).

So, on I plod, with my dodgy wrist and raving mad arms. All I need now is a constant twitch and to start shouting things at random and my transformation to complete weirdo is complete!

Keeping My Head Above Water

2011-10-12T19:52:00.000+01:00

Just when you manage to keep your head above water for a little while, a massive pigeon comes and craps all over it. Well, that’s the case in my life it seems anyway. I have been struggling desperately with my financial situation for a while. Not being able to work because of being so poorly, trying to find work, unsuccessfully when I felt a bit better only to come to the conclusion that no one wanted to give me a job, only the jobs I couldn’t do because of my condition.

So I took a stand, worked bloody hard and set up on my own, a business which I could manage and working for myself means I can work as and when I am well enough to. I still cannot afford to take a wage, that will come eventually, but that’s the gamble I had to take if I ever wanted to try and gain some independence and get back into working life. So I find it incredibly hard to swallow that a letter landed on my doorstep from those buffoons in government today telling me I might not be getting any more financial help with my condition because the whole system which is supposed to benefit people who need help, like me, is actually not going to benefit anyone. The whole law is being changed and it’s been coming for a while. Many discussions have been had about what to do with this country’s welfare system and to be honest it's such doom and gloom and there has been so much uncertainty I hadn’t bothered to pay much attention.

I don’t understand or frankly I don’t wish to understand why they think taking money away from those who really need it in order to try and live a normal life as possible is fair. I know it is down to the selfish lazy idiots who reap in the joys of taking what they are not entitled to and the government are trying to make it harder for them but it also makes things harder for us, the people who rely on the measly change we get handed out. The fact is, if I could work a normal job, where I got paid and I lived independently of the government’s hand outs, I bloody well would, and I bloody well did for the years I was healthy before my diagnosis. I paid my taxes, I worked three jobs at a time to get me through uni and I managed to get a bloody good degree. Now I just feel let down. It’s not enough that I’ve had my career prospects and future taken away from me because of this long term disease, but now I fear I will get nothing to help whilst I struggle to make ends meet.

I am in constant fear that because of my condition various aspects of my future will be affected, such as being able to afford a house of my own, or start a family but now I will be in more fear that these things may never happen because I am not quite disabled or suffering enough. How disabled do you have to be to qualify for spare change these days? The last time I looked having to have a hip replaced at 24 was reason enough to think I perhaps need a little help. How much pain and suffering do you have to be in before you are deemed pathetic enough to get a few quid that may mean the difference in being able to pay for your prescriptions? (Oh yes because for some unknown reason someone with a long term CHRONIC condition such as RA that needs medication every day still doesn’t receive free prescriptions) I experience pain and suffering every day of my life. Every single day in one form or another. My whole life has been turned upside down by my diagnosis and all I want to do is to try and stand on my own two feet and be positive about my future. How can I be when I constantly being made to feel like I’m not entitled to help to let me live?

Living in fear and stressing about finances should not be something people with chronic and long term illnesses have to worry about. Is it not enough proof of our ailments with countless letters and evidence written by our doctors in support of our claims? Is it not enough that I spend half my sodding time at hospital appointments or collecting prescriptions or injecting myself or filling out bloody applications for help that you are telling me I am not quite pathetic enough to receive anymore?

This country is going to pot. There is no support for the weak and vulnerable. Only penalisation which is affecting the wrong people. Almost makes me think I should give up, succumb to my pain and be destroyed by it so that I might just be able to afford some shampoo once in a while. But I try, I keep on fighting and people like that should be rewarded and helped along the way for trying to give back to their country. Shame on you the scumbags who sit at home and play on a fake illness so they don’t have to work for a few months and take every penny they can get. You’re alright to sit down the pub all day, though, aren’t you? Where is the people who abuse the systems sense of community or remorse for taking what isn’t theirs? I am grateful for every penny of help I receive because it helps me live from day to day but now things are about to change I wonder how many will be left in poverty or very ill or unable to treat their conditions because of lack of money for medication and a decent quality of life?

This whole issue sickens me to my stomach. I find it hard to sleep at the best of times but with this added financial burden on top of me I worry just what will happen next that targets the vulnerable people in our society.

Best Day Ever

2011-10-05T19:45:00.000+01:00

Do you ever wonder what it would be like to wake up in a different life? Not necessarily a different person, just things in your life would change. I often wonder what it would be like to wake up RA free. I don’t wish to win the lottery or live in a mansion or anything, just to wake up one day without the instant feeling of pain and knowing that it may never change. Obviously some days it gets better after waking, but I instantly know from the moment my eyes open for the first time. I am constantly reminded when I wake of a condition I know I will still have by the end of that day. It would be lovely to know that feeling of not worrying what struggles lie in the day ahead. It would be nice to know that I can do everything I want to do, without hassle or pain or difficulty. To wake and know that today, like always, can be a good day. To have that control back would be truly amazing.

I don’t wish that I never had RA; in fact I think the experience of living with it has made me a stronger person and I am much more aware of peoples suffering now. I think it has made me mature as a person, think about others more and try to live every day to the full. Those revelations I will always treasure from living with RA. It’s not until you know suffering yourself that you can understand what others may be going through. I don’t miss my naivety and sheltered life. I believe I was a selfish person before all this happened, some might say I still am but I hope not. I try to consider others before making decisions, make time for my friends and family and make sure they know how much they mean to me. I want to help others in my situation, because if I don’t you can’t be sure someone else will who truly understands.

I often daydream of a life without suffering from now on. I imagine that tomorrow I will wake up and a miracle will have happened and my body just returns to normal, without the need for drugs or to try new treatments. RA vanishes and leaves behind a more confident, ambitious and considerate individual. Wouldn’t it be nice hmm? Well day dreaming seems to be one thing getting me through this week. It’s been tough and I am fed up. Completely fed up if I’m honest. Some days I just get so frustrated. It started today with not being able to turn on the tap. After struggling for half an hour and just about getting to the end of my tether I managed to loosen it and run my bath. The bath went to waste anyway because I couldn’t actually bend down to get in it, and there was the fear that I wouldn’t be able to get out. I was home alone. I cried sat on the edge of the bath. Then I felt stupid and had a shower instead. I really wanted that bath, though.

I couldn’t open a jar of jam at work, or lift the boot of my car open and then I went to queue up amongst about a thousand pensioners for my flu jab. Each and every one of them starred at me, probably trying to figure out why I was there. ‘A young person, look!’ I could almost hear them chant. That made me angry. You’re not the only ones entitled to a flu jab you know. I wasn’t feeling the best anyway so to be on my feet for half an hour whilst the nurse whittled her way through the sea of grey didn’t make me feel much better. When it was finally my turn, of course, I was asked why I was there. I almost wanted to say just for a laugh, thought id pop in and get jabbed for no reason at all. But obviously she didn’t know my history or anything so it was hardly fair to be rude to her.

My arm bloody hurts. Luckily they jabbed me in the same arm where my wrist is now dropping to one side after weeks of being in pain. My shoulder on that side is also grinding and causing me to nearly pass out when I try to lift my arm up. Brilliant stuff. I suppose I have one ‘good’ arm at least. Not that it helped the jam jar or car boot situation.

When I finally completed the things I needed to do today, bake several cakes, do a little bit of shopping, get petrol (again, all very difficult with the use of only one arm) I collapsed on the sofa at home at 2pm. I had many things I could be doing, but couldn’t, and I was mad because I was bored. I starred at the TV for a bit and decided it was a great time to clean the house. Of course there is no great time to clean the house but boredom and frustration set in and I couldn’t just sit there anymore. Of course I made things worse and tears and anger followed as I tried to vacuum the stupid carpet with one arm and bashed my bad knee. I gave up. There was no way I was getting the sodding thing up the stairs anyway. I did the dishes, forgetting my wrist splint was on which then got soaked. I only have one wrist splint so now, hours later, I am still sat here with a soggy splint irritating my skin as I have no means of drying it and can’t take it off because my wrist hurts so much.

There are many other things I could tell you about this stupid day, but I won’t bore you with the details. I did throw a few things and the cat was quite scared at one point but you get the gist. To sum up, I am annoying myself and there is pretty much nothing I can do about it. Oh and to top it off my hip hurts. Yep, the hip I had replaced to solve all my problems. Problems not solved. Have a lovely day.

Self Assesment

2011-09-27T19:01:00.000+01:00

Last week my partner and I had an interesting discussion about our personality traits, which I thought I would share with you. He was given this self awareness type questionnaire at work and we thought it would be fun to see how we compare on things like leadership skills, social skills etc. Ultimately it encouraged me to find out things about myself that I wasn’t necessarily aware of. Apparently I make a good leader (which is pretty good considering I run a business) but I lack confidence in my abilities. Of course I instantly related this back to my health. My lack of confidence stems from uncertainty about my illness and whether I can actually complete tasks and challenges.

What I also realised is that I haven’t been a nice person to be around lately. I have been trying to put more effort into work and getting back to a relatively normal life following my hip operation and it has left me exhausted. As a consequence, I am horrible to those closest to me. Snapping at people, short tempered and generally lacking in patience with everyone has been an everyday occurance. When you are trying your best just to get through the day, you don’t have much energy for anything else. I know it doesn’t take much to be nice to people or sociable but when your life seems like a constant effort to do even the smallest things, it’s pretty hard to keep a permanent smile on your face.

I have found it incredibly hard to control my constant feeling of being tired and fed up. I don’t know how others do it but the thought of making conversation about pretty much anything last week was daunting. Frankly, I just wanted to be alone. Lock myself away in my mood and only come out when I was ready to be a normal person again. Stress can make anyone feel short with people. You can feel like you’re fighting a losing battle everyday with RA and this is more stress than we deserve let alone worrying about day to day things like paying the bills, cleaning the house and washing your stupid clothes. Yep that’s right. Last week, and a couple of weeks prior to that, EVERYTHING was stupid and pointless. What’s the point of smiling if everything is stupid? If everything hurts and is more effort than you can manage then just what is the point?

I was awoken from my mood to pleas from my loved ones that I stop being a pain in the ass and snap out of it. Although you may feel like crap, it’s not fair to constantly take it out on those around you and I know this. It just takes a little support and reminders from your loved ones that everything is going to be OK. As soon as I was called on my nasty mood and reminded that sometimes things are hard but I always get through it, I returned to my normal self (well i hope so anyway). I do feel like a big weight has been lifted when you are reminded that there is a reason for getting through every day. There is a reason you are constantly fighting this disease... if not for yourself then for those you love and love you back. If we can’t stay strong for them then we can’t expect them to hang around whilst our mood spirals out of control. I have to fight the urge to give up and let RA consume me every single day but I continue to fight. I continue to fight because I want a future and I want to be happy. I don’t want to be a bitter person who constantly reminds people about the bad hand I was dealt and how unfair everything is. We all know life is unfair anyway so why bleat on about it? Its not going to make a difference.

So, I guess what I am saying is, if you feel like your mood is on a downward spiral and you feel like giving up and screaming at everyone about how unfair it is remember your partner, children, parents or friends and how unfair it is for them to have to watch you suffer and not be able to do a thing about it. Take a deep breath and remember all the things and people you love in life and why you continue to get up every day and fight RA. You are not just fighting for yourself, you are fighting for them. You never win a battle without the support of others so if you rely on them to help you, it can’t hurt to smile along the way (even if it is through gritted teeth every once in a while).

Spilt Milk

2011-09-12T19:39:00.000+01:00

A scary and confusing day for me. After the release of excruciating pain following my hip replacement it seems it has come back to bite me and I have had a couple of days of very similar, but not quite as excruciating, pain. I may have done too much, although my ‘too much’ isn’t the same as ‘normal’ peoples too much which is bloody annoying. I decided to put my fitness to the test last week after giving up smoking, and plus it would be nice to try and do some regular exercise to see if it makes much difference to my RA. Despite a swollen knee, me and my mum went to our local pool twice last week, which by the way was a great testament to local councils as disabled people are allowed to swim for free!

Both times I managed to do better than expected, I wasn’t particularly in any pain although found it a little difficult to get into the swing of moving about more than usual at first. I didn’t suffer too much after the half hour sessions either, which was a bonus. However, as I went through the weekend the knee started to get worse and the pain has slowly moved up my right leg and back into my hip leaving it really uncomfortable and now I have this constant dull ache in the hip which won’t subside, even with a regular intake of pain meds. So I am a little concerned now, and frustrated really. I don’t understand why I am experiencing pain in an artificial joint. It’s not the muscles and stuff around it so it’s weird. Concerned that my two swim sessions and generally being on my feet rather than sat at home being bored for six weeks has taken its toll and this is a warning to not move... ever... or enjoy myself or do anything of any real value. Great.

Why oh frigging why does this happen constantly. I am laughing about it but so annoyed that I get slightly back on track or I am doing well (and I had a very impressive recovery from my hip replacement, if I say so myself) and then I get knocked down again. I hope I haven’t done any real damage for the simple want of doing normal things like a little exercise. I just want to be able to keep fit and do some sort of activity with my mum is that so much to ask?

So I am biting the bullet and having a few days ‘rest’ (in other words I am stopping myself from doing anything I actually want to do including swimming... begrudgingly) and I will see if things improve. To be honest I cannot even be bothered to start the cycle of doctors appointments and specialists again because its mind numbingly frustrating to have to plan stuff around them and by the time I have seen someone, the pain will be somewhere else no doubt. I just want to cry today. It’s not even that bad but the thought of having to go through all of that crap with my hip again and having the energy to sort it out is exhausting and I want to cry.

I could spend my night crying, or I could just swallow my frustration and tears and get on with it. Which at present is what I am trying to do. It’s got to the point today where I am so mad and fed up I don’t want to eat. I don’t want to go out or talk to anyone; I just want to sit alone in my mood in protest until things start to go right. Spoilt little child comes to mind but some days all this stuff to deal with just gets too much and I have to have my moods and tears in order to feel normal again. You let it consume you, let it all out, feel better and then start the cycle all over again. RA is too much today. Everything is too much today. I’m going to bed, pulling over the covers and hoping tomorrow is a good day, or at least a better day so I don’t scream at those I love or have a breakdown over spilt milk or something (has happened before with interesting results of extreme emotions).

Lottery

2011-09-04T21:34:00.000+01:00

Isn’t it funny that with RA, when one thing gets fixed something else packs up? Take my hip for instance, after surgery and six weeks of recovery it’s feeling great and (touch wood) there have been no further problems. However, it seems that my body isn’t happy unless its battling something. Allow me to introduce my giant knee. It has made a grand return appearance this week and as usual, its larger than life personality is keeping me awake at night and struggling to walk during the day. Good thing I hung on to the crutches after my hip op.

I don’t know how you cannot get sick of this constant merry go round of swelling, pain and stiffness in alternate joints. It’s like a lottery pretty much every morning, guessing which joint or joints will be swollen or painful today, although you don’t win anything if you’re right. You go to bed with a sore wrist and wake up with a fat ankle... strange is all I can say.

I have thought a lot about the lottery this week... winning it in particular. Thinking about what the future may bring, I am becoming increasingly concerned about my finances. Yes, it is great having the freedom to run my own business and it is ticking over nicely but you can’t really expect to earn a wage until you are doing very well, so I haven’t relied on this as such. I suppose I always figured I would go back to full time work and earn a wage just like everyone else. As time goes on it’s becoming clear this may never happen. I am pretty much as well as I have been since my diagnosis and yet it’s still not ‘well enough’ that I could manage getting up and doing a full 8 to 9 hour day, five days a week. The thought alone makes me feel ill. I would love to be able to do this, don’t get me wrong, and not have to worry so much about money but the fact is I can’t. I can’t cope with that amount of work each day. The concentration, physical effort and consciousness it requires is more than I have to give.

I would love to say that my business will be a success and that it will one day make me the money a full time job would offer because my job is more suited to my condition. I work for myself so if I feel poorly all of a sudden or experience pain, I rest for a while and return to what I am doing when I can. This isn’t really possible in a normal day job. You can’t slip away from your desk for an hour to have a nap when you feel like it. If I feel awful in the morning, I will rest or sleep a bit longer (maybe until lunch time when the meds have kicked in) and then I will do my work... it’s possible to do this as long as I am meeting my deadlines. Again, you can’t really start work at lunchtimes whenever you feel like it in a regular job. So you see my predicament?

I love to work, it keeps me sane. But I have to be in a role that allows me to keep control of my RA. A normal job just wouldn’t allow me to do this. There isn’t enough consistency in my day to day life that makes me confident I could work the same hours, five days in a row, every week. I think back to the time a few months ago when I felt really good and was considering returning to work. Can you imagine what would have happened if rather than starting my own company I had gone to work for an employer? I would have been probably two months into my job when my hip bust. I would have been unable to work because of the pain (and I couldn’t drive anyway). In reality, I was only able to work through ‘hip gate’ due to the fact I didn’t need to leave the house (the stairs were my only obstacle). Finding out that I needed surgery would have meant another couple of months off if I was in employment. The horror of explaining this to an employer would have been too much, especially so soon into my employment.

Those of you who aren’t sufferers yourself just consider this amount of stress for a moment. Could you handle having to worry, not only about your condition constantly, but how it could affect your job and ultimately your financial situation? Could you handle the stress of having to call in sick on several occasions and not feel guilty about it?

At my last job, the stress and guilt of having to constantly explain why I couldn’t make it in to work made things worse. It made my health a lot worse actually. Stress makes RA worse, we know this, but the stress of just not knowing if tomorrow will be another sick day is and was too much. Added to that, some employers are not great with chronic conditions. They may be well within their rights to not pay you if you are sick and unable to work. What do you do in this position? You physically cannot go into work but if you don’t, you won’t get paid. You have bills and rent to pay... what do you do? Relying on others to help, or the government to hand you out some pocket money seem like the only options. But then consider the stress of constantly having to ask for help. Wouldn’t that get on top of you too? These are actually rhetorical questions on my part because the answer is yes. Yes all of the above will continue to spin out of control and bring you down until you don’t see a way out.

Many people ask me how I can be so positive in my situation. Think about it. If you had all of the above to contend with on a daily basis, along with the medications, endless doctors and specialist appointments, lack of sleep because of pain, fatigue, nausea, blah, blah... wouldn’t you just have to smile? Wouldn’t you just think... ‘you know what, life is pretty shit right now, but you’ve got to laugh’. Luck is not always on everyone’s side, but I believe a little luck will come everyone’s way eventually. Now if my little bit of luck would just hurry along...

Personality Failure

2011-09-01T14:21:00.000+01:00

I’d like to say that this week I have been uplifted and experienced a huge change in mood, however, it seems more likely I am having a personality failure. I know the pressure of quitting smoking isn’t helping (by the way very proud of myself as I am on day 11 now without a cigarette!) but I can’t seem to snap myself out of this personality coma. I have felt doom and gloom for no real reason. It made me think of everyone out there who is suffering, do we all have several personality failures when we experience flare ups? It’s no surprise that being in pain affects your mood.

I hate it when pain strikes and I don’t just mean a headache. I mean full on, chronic aching of joints and muscles to the point where you just want to cry. The problem is when you’re in this pain ‘bubble’ as I call it, it’s hard to carry on as normal. Those who are closest to you bear the brunt and know that something isn’t right, I believe I have treated my closest family members quite badly this week because of my constant mood and inability to smile on cue. I hate being this way and I kick myself when my mum or sister leaves after I’ve spent an hour moaning or snapping at them over coffee. I just can’t seem to want to engage in conversation or feel happy about anything. All I can concentrate on is the aches and pains. I can cope with it better sometimes, but this week it’s like hitting a brick wall.

I feel stressed. I feel incredibly worn out, and I don’t know why because it’s not like I have had much to do besides work these past few weeks. The six week recovery period following my hip replacement is up tomorrow. I can’t decide whether it’s gone incredibly slow or incredibly fast? I feel almost guilty that the time is up because I haven’t been as productive as id liked or really taken the time to recover properly. I know that’s contradictory because you’re not supposed to be productive when resting. I feel like I have to push myself back into reality now and really focus on work this month (which I am happy to do) although I am a little afraid of actually going back to work. Stupid huh seem as though I work for myself? Plus, I have been working from home anyway since the op so it’s not going to be much different. I think it is the actual going somewhere and being away from home that I am afraid of. Here I am comfortable and safe and I can slip off for a lie down when needed. I can’t do that when I am not at home.

I think anyone who has RA deals with these battles of confinement and going back to reality on frequent occasions. You spend a few weeks cooped up in your home when experiencing a flare up and then have to prepare yourself to face normality again. By the time you get used to routine again, no doubt another flare up comes along. It’s a vicious cycle. I now want to concentrate on getting the balance right... which is going to be harder than it sounds. It’s funny, every time I think I have overcome challenges of living with RA it turns out not much has changed and I am still struggling anyway. My anger and fear gets in the way of living a normal life in conjunction with the pain and fatigue. Tough combination. But if I can replace the fear of going back out into the world again and deal with my anger of being shut away for so long, maybe the pain and fatigue won’t be so bad anyway?

Giving Up

2011-08-26T16:59:00.000+01:00

I seem to have hit a real low point this week. Being fed up is quite a regular occurrence, as I am sure other RA sufferers know all too well. It probably has a lot to do with the fact I have finally and seriously given up my nasty habit of smoking. I should have done it a long time ago, for my health if nothing else as studies show smoking can make RA worse blah blah. To be honest I always thought that it was the one thing RA couldn’t take away from me. RA stopped me drinking, dancing and generally having fun so I thought ‘sod it’ I’m going to continue doing one thing that’s bad for me whilst I enjoy it.

It’s an immature way to look at it, as I know it could have serious health consequences but I enjoyed it so what’s the big deal? Now I have turned 25 and I am thinking about the future (getting married, babies, buying a house –all way in the future!) I thought I should give it a good go and quit (with the intention of actually sticking at it this time). I have ‘quit’ before, and soon gave up quitting. It’s a horrid habit that tends to come back and bite you with its cravings and withdrawal symptoms. I wish I had never started to be honest.

So apart from wanting to strangle everyone and hating the world, this week has also been tough because I have felt really poorly. Again, I am not sure if its withdrawal symptoms as it has coincided with quitting smoking, but I have had awful fatigue, nausea and joint pain. The kind of symptoms I haven’t had to deal with for a while so it really has got me down. I think all of these things, in combination with the fact I have now spent five weeks at home in recovery and my four walls are caving in around me, are making me feel very low. I hate the fact I constantly feel like I’m going to burst into tears or scream... for no reason at all. Yes, I know what you’re going to say... these are classic signs of depression blah blah but I haven’t really got much to be depressed about it’s just been a tough old few weeks with the hip op and struggling to keep my business running etc.

I think maybe I need a couple of days rest, or cheering up. It’s probably good timing then that some friends are coming to visit for the weekend, although I hope I don’t scream at them or burst into tears because I’ve dropped a spoon or something. They may think I am a little insane (although most people think that about me anyway).

So through trying to improve my quality of life, once again my actual quality of life is suffering. I don’t feel like doing or saying anything right now. I find it hard to talk to people because I feel so miserable and angry and constantly stressed (again I am not sure what is stressing me out more... the fact that we have ran out of washing up liquid or I can’t carry the Hoover upstairs) I am rather stressed with all things business at the moment, I am struggling to secure help to keep my shop running and I still have another 2 weeks before I can drive. The work load is piling up, which is a good thing, but once again bad timing that I feel like death.

Sods law I guess. Anyway here’s to a tear and scream free weekend... hopefully.

All Grown Up

2011-08-16T17:11:00.002+01:00

I’m surprised at how fast the past year has gone by. I guess time flies when you’re having fun. It makes a change from previous years that have been fairly miserable and full of suffering. I said to myself last year, on my 24^th birthday that this year was going to be a good one. All in all, I was right. I look back over the year and think of what I have achieved and how much things have changed. For starters I have my own business now, which is going from strength to strength. I have a new hip which was totally unexpected and working wonders at the moment. I moved in with the boyfriend, managed to get my arthritis under control and I have never been happier.

It’s taken a while to get there and the years since my diagnosis have been somewhat of a blur thanks to the long list of meds and pain I have suffered. But I am now looking forward to the future and what it has to offer. I know if I work hard this year, follow doctors’ orders and generally take care of myself that 25 will be a good year too. Who knows, it might even be better?

So as I am still in recovery from my hip operation, there is no big night out or celebrations planned this year. I am simply spending quality time with my favourite people... my wonderful family and friends. I am not disappointed I can’t do much to celebrate this year, I am actually looking forward to a nice few days at home with plenty of visitors. I plan to have a gigantic take away session on my actual birthday, ordering all of my favourite foods accompanied by family. I hope for good weather as I am spending the weekend with friends and have organised a BBQ (which will be no fun in the rain!) I really cherish time with my loved ones at the moment. I suppose with the whole hip operation thing I have realised how supportive and caring those who are close to me really are. I couldn’t have got through the past few months without them. They have volunteered to help me with my business, cooked for me, cleaned for me and even dressed me! What amazing people I am surrounded by, I know I am very lucky. So having them around will be the best birthday present and all I want this year.

My duties as bridesmaid went very well last week. I watched my oldest friend marry an amazing man and I was very overwhelmed with love (funny how weddings make you all warm and fuzzy!) Anyway, I managed to walk the aisle without crutches and got away with wearing flesh coloured bed socks which weren’t noticed. The guests entertained themselves as the crutches came out in the evening. The ‘crutch dance’ went down a treat (and it wasn’t even me dancing with them). I was very happy to be part of such a special day for my friend and it made me realise how much we have all grown. Getting married and having babies were the things that ‘old’ people do when we were younger and now we are the ‘old’ ones. I even managed to catch the bouquet (which people swear I elbowed the girls out the way for) so will I be next?! I doubt it but then again who knows what the future will bring...

So I wanted to take this opportunity to congratulate the beautiful bride and her new husband and wish them a wonderfully happy life together.

Now, I am off to make my birthday cake (yes I know it’s sad when you have to make your own cake but as I am the newly appointed queen of cakes it must be done!)

Bionic Status

2011-08-01T08:59:00.000+01:00

So... you’re probably all wondering how I am coping with my new status as a bionic woman?! Ten days ago I was wheeled into the orthopaedic unit at Warwick hospital to be put out of my month long misery with a collapsed hip. The previous night, ironically, had been the worst night I had experienced in a long time. As I wasn’t able to take any pain relief before going in, I was in utter agony with not only my hip but every joint in my body. It was excruciating pain, pain I hadn’t felt in a while. I think the anxiety of going for the operation maybe had something to do with it but all I can say is I’ve never been happier to get to hospital and finally move things along.

The morning seemed to go very, very slowly. Waiting and hoping for a doctor to come along and tell me it was ‘time’ was a bit like hell. Of course, still being in RA agony didn’t help. I was uncomfortable, exhausted and frightened. However, I was lucky to have the boy with me, comforting me with comic stories and conversations to keep my mind off things. I don’t know what I would have done without him that morning to be honest.

Finally, when my bed was ready three hours after I arrived (Joys of NHS wards); it wasn’t long before I was taken to theatre to make friends with the anaesthetist and his crew. There seemed to be about ten people in the room and I didn’t have a clue what they were there for. They checked, and checked again, that they knew which hip to replace. The funniest thing is that the giant black arrow on the correct leg wasn’t a clue enough for them (I suppose I should be grateful that they were thorough).

Everything was a bit of a blur from that point on, understandably as I was pumped full of drugs to ensure I didn’t have front row tickets to my hip being dismantled (not a show I would pay to see). I do remember waking in the recovery room where I, now what’s the word... oh yes, I ‘flipped out’ and the doctors didn’t know what to do as I was about to ruin their fine work by rolling off the gurney. So I was then put back to sleep to relieve my panic. I don’t really remember why I panicked, I suppose it was just the confusion of waking up and feeling something was different about my hip and there were ten masked medical people staring over me. That’s enough to creep anyone out.

Anaesthetic is a wonderful thing. It leaves you hovering in a dream land where you feel pretty much nothing. When it starts to wear off, you then get a whopping dose of morphine for your troubles so really, I am surprised I even knew my own name that day. I don’t recall who came to visit that night after the surgery, I just know I wasn’t alone and that was enough for me. Blurry shapes held my hand and stroked my forehead but to be fair they could have been anyone and I wouldn’t have noticed. But I knew deep down, underneath the druggy fog, that it was my family who were there to make sure I was OK. I was strapped to some kind of triangle to ensure I didn’t move my hip out of place and there seemed to be a forest of other machinery around me... oxygen tanks, for which I had a mask over my face to try and clear the anaesthetic fog, obs machines to ensure my stats were ok, leg brace type things to keep the blood pumping in my lower legs to stop me from getting clots and other things that I couldn’t tell you their purpose.

Through all the machinery and drugs though, I knew I was going to be ok, I knew I was safe. The best part was that I knew my hip was better already over the next few days. Yes, I still felt pain, but it was a different kind of pain as the pain killers became weaker. It was sore and achy but nothing like the stabbing, excruciating pain I had felt the past few weeks every second of every day.

I am excited and hopeful about my bionic future. Maybe I should just get everything replaced if it feels this good? I’d bank on the fact I wouldn’t get in any severe RA states again. But I suppose the new hip will do for now. In the mean time, I plough through my recovery time at home, finding mundane things to do. It’s no fun being taken care of after a while; it’s just plain frustrating watching others do things for you when you want to be able to do it yourself. I feel like a child again being helped into the shower, helped to get dressed, cooked for, all my washing is done and mum is even cleaning my house! Great, you might think, well... yes but I hate to see others doing stuff for me and running around after me. I feel guilty and useless.

I am doing well with my recovery you will be pleased to know. I have been a very good girl and followed doctors’ orders, doing my physio regularly, remembering the ‘rules’ (you cannot cross your legs, break the 90 degree angle with your hip and you must sleep on your back for 6 weeks). It’s not great, but you get used to it. I have all these adaption’s and aids in the house to make life easier, crutches, toilet seat raisers (glamorous), bed and seat raisers, something that looks like a litter picker and high stools for washing at the sink. The most glamorous part of my recovery has to be my sexy white, knee high, bed socks though. They are the kind of thing you wear when going on a long flight to stop DVT. They are most fetching... and have to be worn for six weeks... every minute apart from a saving grace period of half an hour when I can give my feet a break. Yep... white socks, every minute of every day... for six weeks. They don’t go with anything in my wardrobe before you ask and I look nothing like Britney in her ‘Baby one more time’ video. Shame.