Cheers To That

So another year has passed in the life of Rheuma Girl. I suppose at least this year despite the ups and downs, I have something more to show for my nearly 26 years. I cant believe this journey started 4 years ago. So much has changed from that point. But in the past year I have at least established myself as a businesswoman (that sounds really weird!). I have ran with my ideas, and turned them into reality through hard work and determination. I want to look back on my life and not just be the girl with that disease or that condition that people take pity on. I want to be acknowledged for the type of person I am and what I have achieved. I think running a business at 25 is quite an achievement anyway.
Considering this year started pretty badly, I have once again picked myself up, dusted myself off and carried on regardless. I didnt anticipate being alone this year, but to be honest I have never felt more lonely than right now throughout everything. As much as I appreciate my family and good friends who have showed support, I cant help but feel left behind a little. I think its the challenge of going about day to day life, being proud or excited about things and not having anyone to share it with. I am so happy for friends who have grown up, found solid relationships and are looking to the future but at 26, my future still feels so far away. I cant help but wonder about having a family and getting in a serious relationship. I always thought I would have most of that covered by now. As a young girl, 26 always seemed so old! I figured I would have at least settled down, but things change, people come and go and you start to cross out all of the people that shouldnt really be in your life. Which ultimately means youre left with the good ones that will always be there.
What am I hoping for this year? Well, I know it cannot be forced but I would like to think I may find someone special enough to start thinking about a future with. Maybe I have already met them but not realised yet? I would also like to think my business will become more established, and continue to be enjoyable and realistic in terms of my lifestyle. At the moment I can manage but with help. So here's to being 26... and to the anticipation of something great to come this year.

Come Aboard The Yacht of Life

So here we go again. Tomorrow I face the daunting task of sitting in a chair for around 8 hours whilst I’m pumped full of drugs and poked at. Yep you guessed it, its Rituximab infusion number 5. I cannot say I am looking forward to it, did you guess? This time especially because of work. I didn’t have to worry so much about side effects when I had treatment previously because it didn’t matter if I felt like crap for a couple of days or weeks even. I had nothing to do anyway. This time it’s different. I have a job to do, a business to run, so feeling horrendous and having time off isn’t an option. I have allowed myself two days to recover(ish) as realistically I know I won’t be able to get up the day after an 8 hour infusion and do a full day on my feet... it just isn’t going to happen (and that ‘s not being negative, just sensible). On my second day off, I do need to get into some sort of gear and do bits of work from home and fetch supplies etc so it won’t leave much time for lounging around.  I am sure that other people do just fine... right? I know I wasn’t quite right for a while after my last infusion but I can’t say how I will feel returning to work because I’ve never had to do it before.

Anyway, the thought of it scares me a bit. Because I have put myself in the situation where I have to be ok. As you all know, the unpredictability of RA means you can never say anything for sure when it comes to how you will feel. It’s really frustrating trying to be prepared for something that you can’t predict. I still have sleepless nights where I imagine waking up and not being able to move for pain. The fear of not being able to walk as I try and get out of bed still haunts me, because I know that it could happen at any time... and there’s not a hell of a lot I can do about it. Living with RA is like one big wait and see game. You wish for a good day when you have made plans, but inevitably have a bad one and then good days can often turn into bad ones... etc etc.

So, back to the point... I just wish I could foresee how things will go, as I am sure we all do in some way (if you have RA or not). Not being able to tell the future is a part of life, it’s the same for everyone (unless you have magical powers, in which case please apply within). But for some people seeing into the future means different things. Some may wish to know if they will get the job they long for, get the girl of their dreams or even just be happy. But for me, the future is only tomorrow. Thinking any further than that seems near impossible because I just don’t know what this disease will mean for me in the next few hours, let alone years. This obviously makes work very hard, and in a business where I have to plan ahead, all I can hope for is that with enough help I will get through whatever I need to do. I worry I will push myself too far now I am working again, that I will use the excuse of having good days to do as much as possible in fear of bad days to come. But, inevitably doing too much brings about bad days anyway. Sounds confusing doesn’t it? If you are not living with RA but reading this because of someone you know who suffers with it or other chronic disease, I bet you didn’t realise the sheer volume of things we have to consider on a daily basis such as this.

My mind is a whirlwind of anticipation, eagerness to get things done whilst I am well, trepidation and sorrow for the things I haven’t and couldn’t have done since being diagnosed. I am more positive about the future now, don’t get me wrong, but I can’t help but dread being taken back to that dark place where I am not in control of my disease again.

Getting used to living a ‘normal’ life is taking its toll at the moment. When I say normal, I mean being back in the routine of day time work. I am putting every ounce of myself into it, not leaving room for much else in the way of a social life. But I knew that was the choice I had to make, because whether I started my own business or not, any job would have exhausted me and it’s better to be exhausted doing something you enjoy and love than just for the sake of it. Some days I do long for when I had no responsibilities which made bad days a little easier. But then I remember the emptiness of my life without purpose. The boredom and depression that came with those long, unfilled days was exhausting in itself. At least when I lie down to sleep at night, after a long day, I feel a sense of achievement and pride now. I try to ensure I still make the effort to do things outside of work too, and that will hopefully be more enjoyable now I have someone a little bit special to share it with (more details on this soon). I guess it’s all about balance between work, rest and play. When I have worked out this formula, specific to RA sufferers, I will let you know, from aboard my yacht...  as I will undoubtedly be a millionaire who has cracked the formula to a happy and healthy life for everyone.

Drive By

I can't believe it’s been nearly three years since I got my first motability car. For those of you who don't know what that is, it’s basically like a contract hire scheme that means the money you get for having a disability doesn't come to you but instead pays for your car each month. For me, it’s a Godsend. I couldn't manage without my car; even on good days driving is a struggle let alone having to haul my ass to the nearest bus and train or whatever involving walking, carrying stuff, uncomfortable seats etc. Anyway the act of doing anything is tough when you have a bad day with RA but trying to get yourself somewhere with no transport is even worse.

So my car has pretty much meant I can have some level of independence, I wouldn't be able to afford one if it weren't for this scheme and I certainly couldn't rely on friends and family to taxi me around to work, drs appointments, hospital appointments and anywhere else I want to go. When I first got sick, I didn't have a car as I took the bus to work. At the time I had to start asking my partner to drive me to work as I couldn't bear the painful walk to the bus and then from the bus to work. It was a frustrating situation for us both and took its toll.

So I looked into the motability scheme and tried to sort it ASAP so I could regain some of my independence. I noticed whilst trying out cars the strength in my wrists, arms and shoulders was deteriorating and has done even more so up to this day so rather than trying to painfully change gear and mess up my knees even more with clutch control I went for an automatic car. This was the best thing I ever did as driving on my worst days is not such an unbearable experience. Getting in and out of the car is another thing... but can't really do anything about that other than having some kind of walk on vehicle (wouldn't that be great?!)
Anyways over the past nearly three years that little car has meant the world to me. It’s taken me everywhere and been with me on the journey through my first years with RA. It took me home to my family when I had to leave my 'former' life behind after my first heartbreak. It’s driven me to appointments where I was told treatment was unsuccessful and appointments where I was told treatment seemed to be working. It drove me to my friends when my heart was broken again after trying to make a relationship work. And it continues to carry me to my treatment days; with my mum in the driver’s seat on the return journey (driving after a full day’s infusion and all doped up is not a great idea!)
I love that car for so many reasons and what it represents, but it also triggers some negativity. For example, I've mentioned before about the infamous blue badge incidents where I've been shunned by people, shouted at for abusing the system (as apparently I don't LOOK like I need a blue badge - didn't realise that to qualify for one you had to look a certain way!) And I suppose jealousy. The jealousy comes from driving around in a nice car, when some people think I don't deserve it. I don't deserve to have a decent car if I am not paying properly for it.

But you see, I am paying, and I am paying in more ways than you can ever imagine or see. Firstly, I pay a fair chunk of money each month to have the car, yes I PAY for it. The pain, horrendous fatigue and every other symptom I feel daily is a high price to pay for something shiny with wheels. Frankly I'd swap you the car for a wheelbarrow if it meant not living with this disease. It’s one of the small 'perks' if you can call it that; I prefer to think of it as a 'support', that comes with having a disease that is disabling. I have two bloody new hips to show how disabling my disease really is. I have come to think I'd like to take the following around with me in the car; my medical notes (which now amount to about a million pages), the x-rays of my ravaged bones and joints, my two old hip joints nicely preserved in a jar, the wrist splints, walking stick, knee supports and the stacks of pills and injections and infusion bags and machines.. Just to prove how much I do qualify for the sodding car and the blue badge.  I don't actually think all that would fit in my car, but it would shut some people up who dared to question why I parked in a disabled space or why I got to drive round in a shiny car when I'm broke. Shut it. Just shut it, move on and complain about something else you don't have. I could sit here and moan all frigging month about the things I don't have and want, but those things don't include a shiny car, more like a decent night’s sleep, a day without pain, a knee that's not the size of my head, my own hips back etc etc (the list goes on but you get the point-they are not material things, just the basic desires of anyone to be healthy and to be supported).
So let me tell you jealous individuals who crave to have a car like mine or wish you could park nearer the supermarket doors... There is so much more to life you should be wishing for and I am sure if you swapped lives with me for one single day the car and the handy parking wouldn't make up for the life changing disease you have gained in return. Just think about that before you judge people for doing certain things or having certain things, what consequences do they have to face to have whatever it is they've got? And would it be worth it? My guess is no. I need to swap my car soon (as you only get it for 3 years and then have to change it) so I am trying to decide what to get bearing in mind the adaption’s and support I need from a car (so no a soft top mini that I can't get in or out of is not an option).    Whilst I look through the brochures and others get excited or a bit envious around me I can't help but drift off and think how the hell did I get here? How did it come down to this deal that the kind of thing I worked hard towards having all my life like a good job which meant good wages and the ability to buy my own very nice car now came to a compromise... A deal where all that hard work means nothing and all I had to do to get a nice car (but with limited options) is have a horrific, lifelong, incurable condition that will probably eventually cripple me so the only thing I’ll be driving is the soft top wheel chair I will be strapped to? Ok, ok so I'm exaggerating there slightly and making jokes but it’s kinda true. So I intend to enjoy my hunt for a new car, ignore the envy, and take from life what little pleasures there are amongst the pain.

What Makes You So Special?

When starting a new relationship, friendship or even employment, do you tell them about your ‘condition’? The question that keeps popping up in my mind as many people often write to me and ask for advice on this. The truth is, I am completely unsure myself.  It’s something that shouldn’t put people off dating you, however, the sad thing is I know that it does. But only people who are shallow or have no concept of how to deal with difference.

I have had experience if it in the past, not recently, but I made the mistake in thinking that everyone is capable of compassion and understanding when it comes to something you have no control over. There are some very shallow people in this world. They surround us every day, seeking out perfection that frankly doesn’t exist. You shouldn’t have to hide who you are in terms of your RA and how it makes you different, but at the same time RA doesn’t define us as people. It’s not the first thing you mention when you meet someone in the street, or the first thing you tell a waitress or a car salesman. Mainly because you don’t see it, it is invisible. Where it gets complicated is withholding the truth. Lying about your situation, it doesn’t need to be done. If you feel you have to lie then you must not feel comfortable with that person.

With friendships, things are a little easier because friends should be friends no matter what, they are not judging you on the same basis a potential partner would. It shouldn’t matter to them how long it takes you to get dressed in the morning or that you can’t do a particular activity because of your disability. If someone won’t befriend you or judges you because of having a chronic illness, they don’t deserve to be in your life anyway. Ask yourself, would it matter to me if any of my friends were in that situation? I am sure your response will be as mine, a big, fat no. This rule should really also apply to potential partners. As yourself, do you want to be with someone who cannot see past what you have? Do you want to be with someone who is put off by an illness and how it might affect their lives, as opposed to wanting to be with you and help you through it? What about the future, I mean, if that person can’t accept something like RA, how would they feel about something terrible like cancer? Chances are they probably wouldn’t support you through that either. So that should tell you that deep down, that is not a good person, and definitely not a person you want to be in a relationship with.

Anyway during the excitement of getting to know someone and dating there is nothing scarier than having to reveal something about yourself you feel might scare the person you like away. This could be anything though, like the car you drive, the job you do or revealing some embarrassing photos from your past. But if you are confident and comfortable with who you are and what you have, then it doesn’t have to be a big deal. It doesn’t have to be something huge and shocking. I know it’s easy to say that but I have got to the point in my life where I am comfortable with who and what I am and if people don’t like it... well they know what they can do.

OK so having something like RA or a chronic illness or a disability or whatever means you are different. But different is good. The way I see it, you are even more special. You are special because of the fight you have to live a normal life each day. You are special because you are brave despite the pain and sadness you may feel sometimes. You are special because you hold your head up high and present a smile even in the darkest of times. If anyone is smart enough to know how special you are then they might be lucky enough to keep you.

People I talk to are often intrigued and very interested in what my condition means to me, how I overcome things, how I battle through to live a normal life. And when I talk about what I have overcome to be where I am today, people are impressed. It is impressive, and shows great strength of character and confidence when you are able to talk about something like that openly, because it’s not every day you meet interesting people with stories to tell. Stories that people admire. As you grow older, and I don’t mean to get all wisdom based on you now as I know I am still young, you realise that looks and physical things are not the most vital thing about what attracts you to someone. It becomes more about the whole package, your personality, your strength of character, your confidence, your achievements etc. 

I say this because I know a lot of you who are reading may still be at school or at college or at the stage where people can be judgemental because you are different... It might not be as easy for other people to understand because they haven’t experienced much of life yet and don’t appreciate other peoples’ feelings as much as you do when you grow up. Kids can be mean, I know, I was picked on (not massively) but for stupid things when I was in school especially by boys and its humiliating and makes you feel ugly and horrible about yourself. The thing to remember is that you as a whole will be a better person in the future because of what you are going through right now, and those who sit around and judge what they know nothing about will probably not get very far in life anyway.

When you grow up, you will realise what is important and it’s not all about how someone looks or how they dress or even how they walk or talk, what’s important is the type of person you are, what you do with your time and how you treat others. Someone who appreciates these things is the type of partner you should be looking for, and if he looks like Brad Pitt that’s just a bonus (wink wink).

The same principle should apply for employers. I know that your RA may affect your ability to do some types of jobs but you will know your own capabilities and probably won’t go for something that you know you can’t possibly do, or you will figure out a way that you can do it prior to applying. So whilst it is important to let your employer, or potential employers know about what you have because of all sorts of legal reasons as well as moral ones, they should not base their decision to employ you on that factor. It should be about your suitability for that job and whether you can do it well. They won’t be looking at your appearance, they will be looking for experience so use your positive stories of strength and overcoming daily challenges just to live as reasons why you stand above others for that role. You will have probably experienced more challenges in your life, even at a young age, than most just for living with a chronic condition. So as you should in most situations, don’t dwell on what restrictions you have, but what having the condition has given you, the skills you have learnt, the strength and confidence you have built because you are a fighter.  Any good employer should see that you stand out for a good reason, not because of your limitations.

And once again we go back to relationships. You stand out from the crowd because you are different. Because you are special. Because of what you have to do each day to survive and function. Someone special will see that you are amazing, and beautiful because of what you have overcome, and anyone else isn’t really worth bothering with.

Throw Me A Bone

I have gone from not having much of a life or career because of pain to not having much of a life because of my career and the pain and tiredness it causes after a hard day’s work. I am sure those of you who work with RA will know that work does take up pretty much all of your energy and strength, and doesn’t leave room for much else! Which is why it is so important to me that I do something I enjoy for work, if I am not going to get much of a social life after it! I don’t miss being sat at home, daydreaming about living a ‘normal’ life one bit. Waiting around for the day to ‘start’ when everyone comes back from their jobs when you have barely got going is not a nice feeling. It’s demeaning and makes you feel worthless, as I have said many times before. But I do know that work isn’t everything. You shouldn’t  live to work, so people keep telling me, but where I am right now is where I have longed to be, something I have deep down always wanted, to feel important, valued and more than just the poor girl with RA.

I don’t intend to work until it kills me, don’t think I am that stupid. But I am just trying to get the balance right. At the moment, whilst I get used to having a job again, having responsibilities again, I am having to let people down on occasions. Friends and family have had to meet without me because by the time it gets round to doing something with them, I simply don’t have the physical or mental strength to a) hold a conversation, b) make the effort to look half decent to go out and c) drive (when my knees and ankles are fat and sore from being on my feet all day). I don’t expect everyone to get that, they might think that I am simply a bad friend or someone who lets people down continuously but I hope that if they are true friends they might try to comprehend the transition I am going through at the moment and that just because I am doing something normal again, like going to work, it does not mean I am cured.

On that note, isn’t it amazing how many people think that everything is perfectly alright again, that your RA has magically disappeared, because you are back to work? Do they think that the pain doesn’t wake you up in the night anymore? That the pain and stiffness is no longer there in the mornings? (In fact some days its’ worse now than before from working hard or doing too much the previous day) The fact is, RA doesn’t go away. It never goes away. It’s just that some days are better than others, and on the bad days time teaches you how to cope a little better.  I am not complaining about the ‘you look well’ comments, or ‘look at you doing so well and feeling so much better these days!’ That’s great, but they don’t see the occasions I go home and pretty much collapse into tears as I have given the day everything I have got. I cry because of the pain and exhaustion and with pride that I managed to make it through the day without breaking down in front of people (especially my customers, they don’t want tears with their tea and cake!)

Sometimes I just miss being looked after a little bit. Perhaps going home to mum or someone knowing that they might just help you make tea, or do your washing as you’re having a bad day. But in my quest to remain independent, I must carry on with these other little jobs myself. (Some nights I don’t eat dinner, for simple lack of energy to be able to cook, or not being able to stand for too long as my legs hurt like hell).

Anyways, I am rambling. You get the idea. It’s too much sometimes, that’s all. Throw me a bone here.

Life... and the cat

Recently I have been experiencing these overwhelming moments of sadness and grief. Not for any particular reason though, and I am struggling to figure out what it is I am sad about. The only thing I can put it down to is feeling alone right now. Life seems to be moving so quickly, and generally I am really happy with what I have achieved, especially recently with my business and taking on so much professionally. But there seems to be something missing. I don’t notice it as much after a busy day at the ‘office’, I am frankly so shattered that I get home and do what needs to be done and then look forward to sleep! But on the days where I feel more alive with energy to burn, I have found myself in a bit of a void when I return home.

I don’t mind living alone. It doesn’t bother me, and I don’t care if people think I am sad or pathetic for doing so. For me it signifies independence and being able to live a normal life. But I do miss the days I would await the arrival of a loved one and share stories about the day or have someone special close by for when I needed comfort. It’s not so easy to get sympathy or compassion from your cat who runs off at any given moment... and frankly, well he’s a cat.

I guess what scares me is the length of time this will go on for. I can cope with this intermission where I ‘find myself’ again after years of being in a relationship. I can deal with a few nights alone when friends are with loved ones. I don’t mind having peace and quiet as I relax into a bubble bath. But I don’t think I can stand the emptiness forever. I don’t think I can deal with the silence for much longer. I’ve noticed that my sadness brings pain with it, making my joints flare as I’ve often noticed before. My emotional state has a massive impact on my physical state. I try and snap myself out of it to feel better, after all I am in a pretty good place in my life, all things considered. But I still can’t shake the feeling of... ‘Is this it?’ Is this all I can hope for now? After all, I have achieved what I have set out to do over the past few years, return to work and be able to live independently... I just didn’t expect to be so independent so fast. It’s nice to rely on someone else to cheer you up sometimes. I forgot how nice it is to know that after a really tough day, someone is waiting at home to make it all better and help with the necessary things that follow work like cooking, cleaning etc. It really is difficult to complete all those tasks on a day where you barely get through work, let alone face all the normal things people do when they return home. Just be nice to have a helping hand sometimes, from someone who actually wants to be there.

Tell me, does everyone have these ‘sad’ moments where they contemplate their life and everything in it that might be missing? I do know how to beat myself up hey!

I have my next round of rituximab in a few weeks, it will be interesting to see how I cope with that and work, remembering the tough side effects I have felt before. To be honest, I won’t have much choice but to get on with it. I’ll only be letting myself down but my business can’t run without me!