Cold Sore Christmas

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

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

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

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

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.