F.E.A.R

When things are going smoothly, I find it incredibly hard not to look for that next bump in the road. I almost expect it. After living with constant ups and downs over the past two years, I worry when the next fall will be. In fact worry is a massive understatement. I live in fear. Fear of the next flare, fear of disappointment and fear of things taking a turn for the worst. It’s only natural, I guess, when things have been going so well for me lately. Yes, I still have the odd bad day and slight stiffness/pain etc but I have learnt to deal with that now and plan my life around it so it no longer stops me ‘living’. But, if the day came when things got really bad again I am not sure how I would react.
Obviously what doesn’t kill you makes you stronger, and I am a living breathing example of that as I am sure many of you are. I have picked myself up and dusted myself off so many times in my past and, through determination, I have got through really bad patches. I’m not sure I want to do that again and the fear is knowing that I probably will have to. With RA you expect the unexpected. You can never fully imagine a life without pain or fatigue. All you can do is enjoy the good days as much as possible because tomorrow may be a bad one. I don’t know what the future will bring, I just know that whilst I feel well, I vow to enjoy and make the most of every day.
Scientists are always looking for cures and working on new treatments and that fills me with confidence that one day, perhaps in the near future, us arthritis sufferers will not have to suffer anymore. Being positive has certainly improved my life, I supposed when you’re so down the only way to go is up. Living in fear is terrifying. It’s the knot in my stomach every morning I open my eyes and pray not to feel immense pain as I have done in the past. The relief I feel when I realise I can get out of bed without difficulty is overwhelming and that’s what makes me think I must do something worthwhile today. I know for some of you, it has been a while since you had a day like this, but believe me if anyone had told me just a few months ago that I would be able to do the things I am at present I would have laughed in their face. So try not to live in fear, my friends, a good day is only round the corner.

Cocktail Hour

On the eve of my birthday I am feeling quite reflective of the past few years of my life. It’s an amusing coincidence that the current cocktail of pills I take each day equates to the same number of years I will be in age tomorrow. Yes, 24. I can’t help feeling old before my time. Maybe it’s the creaks in my knees or the fact I often envisage myself with a Zimmer frame that I have the opinion I am getting old. You may laugh but the past couple of years have surprisingly, what with the lack of things to do, flew by. I came up with some descriptive words to sum up the past five years of my life:
19 = Ambitious
20 = Happy
21 = Drunk
22 = Devastated
23 = Defeated
It shows clearly how my mood has changed. But now I am (very nearly) 24, I would describe myself as Optimistic. I have gotten over the devastation and defeat the past couple of years have thrown at me and I look to a brighter future, even if I am nearing a quarter of a century whilst being unemployed and living with my parents. It’s not really that bad is it? I still have time to turn things around and I am positive this time next year I will still be on the road to recovery but with some life experience, a fabulous job and home and a God like boyfriend under my belt. (Its not asking for too much is it?) So, here’s’ to me at cocktail hour. Happy twenty fourth, Rheuma Girl.

Thanks for coming

An update on the malnutrition situation: it is no more. I went to see the (less than friendly) dietician yesterday for a follow up appointment and after weighing me she pretty much showed me the door. What a waste of my time. I was expecting to have some in depth talk about how to live a healthier lifestyle or what foods to avoid/include in my diet so I never have to suffer with dramatic weight loss again. But as I expected the questions I asked were given direct, snappy answers of “just keep up what you’re doing”. Great. Thanks. I neglected to mention that I am not really doing anything differently. I have of course stopped drinking the calorific supplements as it can only lead me down the path to 60 stone.
I do eat well, don’t get me wrong. I have no irrational fears of fruit and vegetables but I can’t help feeling anxious about continuing to put on weight. I am happy with my health at present and my weight has had a massive impact on increasing my energy levels and making me feel “normal” again. But I have always had slight issues with my weight, even before my RA. I suppose it’s some sort of anxiety that I will wake up one day obese. I have control issues I think. I hate the fact I cannot control certain things in my life, like my RA, the weather, or the lottery numbers. However, not eating is something I can control. Deep down I know it’s ridiculous. I am a healthy weight for my body type but I have started to notice some old habits coming back from my teens.
I suffered with bulimia for a short while in my mid teens. I put that down to stress and possibly seeking attention at the time, not that I really told anyone about it apart from my mum. Ever since then I have been cautious of my weight, watching what I eat more intensely at certain periods in my life. I know everyone has concerns about bits of their body they are not impressed with but I wish I could get over this ridiculous notion that I need to be skinny to look good. Because, lets face it, there are far more important things to worry about and my health is a priority. I think it has a lot to do with being more inactive than “normal” people. I cannot exercise as much as id like because I fear a flare up so therefore I have to watch what I eat more. Get over yourself you must be thinking, well you and me both.
Don’t worry, I will never again have an eating disorder as such, I know how bad it is for you. I think I just need something else to concentrate on with my free time. Maybe ill take up bird watching?… on second thoughts no.

Are you gunna go my way?

Ever get that feeling that no matter what you do things just never seem to go your way? It’s a very defeatist way of looking at things I know but I every so often have those days where everything is a chore. Just when you think things are looking up the smallest of things can happen to put a downer on the situation. I have trained myself to thinking positively in these situations that unfortunately its just life. Roll with it and you will come out the other side where things are a bit better.
I’m not necessarily just talking about living with RA, there are plenty of ups and downs there for instance when your feeling well, out of the blue a letter comes to tell you that your benefits are being looked at again or you need proof of your condition for something or other… why cant you just enjoy being well for a little while? I am talking about the itty bitty things that make your life that little bit more difficult. Like today, for example, I was feeling well and helping my dad out with something which meant driving a little bit more than I am used to. I was excited as it gave me chance to stretch my cars “legs” as I haven’t had much use out of it being unwell for so long.
All was going well on my little country drive when out of nowhere an asteroid hits my window screen (now when I say asteroid I mean stone). It left the smallest of cracks in the glass, and although it was a nuisance, I continued to drive. The crack got bigger and bigger until it stretched across a quarter of my screen. Bloomin’ marvellous. The first time I try to get out and about a bit further I hit an obstacle. Now I have to have the whole window screen replaced, great.
When you think about it, it’s kinda funny. It’s almost like I am meant to just stay in doors and be pursued by bad luck. However, I’ve already had my share of the bad kind of luck so I am used to it cropping up when you least expect it. I simply pick myself back up, dust myself off and laugh in the face of badness. Laugh it off. It happens. But there is always someone worse off than you right?

No, you can't read my hamster face

I was warned of the consequences of taking steroids. I have previously had steroid injections that didn’t really have any impact in terms of side effects or effectiveness in general. However, when I was told by my rheumatologist that maybe steroid tablets were the way to go to dampen down the flare up (the one, big, long flare up that has lasted over a year mind) I was pretty much ready to do anything to not be in pain.
I read through the information that comes with the drugs (and to be fair if everyone read the warnings on any drugs we would never take them!) but was confident that none of the side effects could possibly be worse than the pain I was in. I admit I may have been wrong on this occasion. The information stated that the steroids could cause “rounding of the face”. To be honest I didn’t really know what that meant… how can your face suddenly become round?! But it seems life is sodding unfair and I am now sporting what I like to call hamster face syndrome.
It’s probably not as drastic as it seems but for someone who has had a pretty gaunt face due to malnutrition and general ill health over the past year I have noticed it and it bothers me. It bothers me because I am vain you might say, well yes in some respects I am because I care about my appearance but storing what seems like 20 stone of fat on your cheeks would bother you too no?
Facebook has a lot to do with this. I see pictures posted of me from back in my gaunt days and more recent ones where I look “healthy” (I take this as “rounded”). I am not complaining, don’t get me wrong, as I want to be and look healthy but does that mean my face has to look hamsterish? People aren’t meant to talk about their insecurities as it draws attention to them but I like to talk about stuff and I know many people on this dreaded medication may have suffered the same problem. I am informed that when I stop taking them, I am currently reducing my dose each week that the hamster face syndrome will hopefully disappear too. Well I bloody well hope so. If you see me in the street, take pity on my hamster cheeks and see it as a good thing (it’s only a sign I am well and truly high on steroids).

Baby boom

When I was younger, not that I am exactly pushing my free bus pass now or anything, I always dreamed of having the perfect family. “Perfect” to me meant having 2 or 3 children, the first of which was to be born in my early 20’s. This was simply because I have always had such a fantastic relationship with my mum, who happened to have me at a similar age. I suppose I thought the relationship with my mum had a lot to do with her being younger and I could relate to her more than others could with their mums.
Obviously as I neared 21/22 years of age it was pretty clear I was not ready to start my family, I still felt a child myself to be fair! My priorities were shoes, alcohol and having a jolly good time not breast feeding and playschool. I wanted to live my own life a bit more and worry about myself for the time being. It just so happened that 22 was the year I really had to think of myself and nothing else. That was the year I was diagnosed.
Throughout the first few months of realising I had this condition, the constant tests, medication, being off work etc took pretty much all of my time and plans for any kind of future were firmly put on hold until I could figure out how this was going to affect me.
I was told that certain treatments were not considered safe if I was looking to have children in the near future, but as that was the furthest thing from my mind at the time I probably didn’t ask enough questions.
My treatments have obviously changed over the last year and as I am receiving more aggressive treatment, I have been informed of the consequences it has on “making babies”. To put it simply, the medications I am receiving will have devastating effects on a foetus, exactly what effects are still being researched I believe, however this means that if I wish to have children I must stop my treatment at least a year before conception is considered. Scary thought for any female, that now I actually have to carefully consider and plan when to have a family when for most people it is unplanned but welcomed nonetheless.
The thought of coming off medications for an entire year is daunting enough, how would my condition be controlled during this time? Would I be in agony for a whole year just waiting until I could get pregnant? Then obviously what if it takes a long time to conceive? All questions I think of now my head is a bit more screwed on but should have maybe asked before I agreed to have the treatment.
There is already so much to consider for the future that extra pressure is surely not needed, however that’s the way the cookie crumbles folks. In some ways I envy the people who have had children and sorted their families before they were diagnosed, however I know that it is not an easy ride for anyone and can’t imagine how tough it is if you’re feeling crappy and having to take care of your children as well as yourself. Phew, tough one.
One good thing I have heard on the grapevine though is that pregnancy often sends women with RA into short term remission (something to do with the hormones) so when actually pregnant, you may have less symptoms and pain. Maybe then, I should give up the drugs and continue to have babies for as long as possible?! It could be like the Von Trapp family (only without the singing).

Touchy subject.....

For many people, a diagnosis of RA not only presents physical limitations but can also create mental health issues. I use the word “mental” loosely (as frankly it makes you sound like an axe murderer) but unfortunately the problems that come hand in hand with RA, such as depression and anxiety, are classed as mental health problems.
I have always been an emotional little soul, I get that from my mother who can cry at the most ridiculous things (love you mum). I remember the first time we watched Beaches together and we were both crying uncontrollably on the sofa. What a pair of idiots. But I am not talking about the feeling of sadness you get when you watch a sad movie or you see an adorable puppy. I am talking about the cold hard grip of reality when life just doesn’t seem worth it anymore.
I believe that most people suffer from some sort of depression or anxiety in their lives. This can come from grief, stress, break down of relationships or any “normal” life experiences we go through. Depression linked to long term illness is somewhat different. When you contemplate a life you didn’t really want or expect to live, it can have devastating consequences on your (here’s that awful word again) mental health. It doesn’t grab you overnight, in my experience, but can be a long downward spiral of a road that eventually takes over you.
I think of the days where I couldn’t get out of bed, feeling like a complete failure and insisting that it was never going to get better and I hate myself for that. Its very difficult to be positive all the time and to be fair not everyone likes miss smiley smiley! I sought help in the end when it got to the point where I couldn’t see the point. It’s a horrible thing when you have to admit to people that you are feeling depressed but the endless panic attacks, sobbing and generally feeling your lying under 10 ton of crap just couldn’t continue if I was ever going to get better.
I received help in the form of counselling and yes, more, medication. I normally would not advise anyone to go down the route of medication for mental health problems but I stuck it out as long as possible and decided it was the only way forward in my situation. Don’t get me wrong, my RA had a massive part to play in my “sad” days but other issues that came as a result of that (loss of job, moving back home, financial crap etc) all add up to a very vicious circle. The fact is your mental health has a massive impact on your physical health and whilst you are feeling down your physical health will not improve. It was only after seeking help to soothe the mind that physically I was on the way up too.
No-one likes to talk about their “feelings” in this day and age, unless its to someone you pay £100 an hour to while you lie on their couch, but my point is that its vital to discuss the effects RA and other long term illnesses may have on your mind. I am incredibly lucky that I no longer feel the grip of sadness and have a more positive outlook on life (not quite miss smiley smiley). Do not feel ashamed or alone in this, it is perfectly normal and with the right help you will soon feel like there is a point to all this again. Ooh I’m getting all emotional now, damn it mother….

Fluctuating weight = sizable wardrobe

Before my whole RA ordeal began, I was a “perfect” 10 dress size. I was happy with my weight and even happier with my (enormous) wardrobe (most of which I admit was never worn).
After my diagnosis when the stress, pain and general self loathing kicked in, I began to drop the pounds which ultimately meant wearing what mostly resembled bin liners for clothes (nothing fitted me anymore, damn it). I hated the way I dressed and felt swamped. Everything was baggy, making me look pretty much anorexic and very unwell.
When I started to come to terms with what was happening in my life, I made a conscious effort to care about the way I looked again. Don’t get me wrong I didn’t turn into a tramp overnight but pretty much had more important things to worry about than following the latest trends or piling on the make up.
Obviously by the time I realised how awful I looked, my dress size had dropped to a 6. Some of you may think of this as an excuse for a serious retail therapy trip but when your living on benefits (pretty much pittance a week) and don’t have much energy to invest in trawling round shops it’s a difficult task, even for a shopaholic like me. I invested lots of time scouring the internet for sales, vouchers and essentially shops that actually sell size 6 clothing (not as easy as it may seem) and slowly started to build up my new wardrobe. I decided not to throw out any of my size 10 collection as there was always a chance that I would be that size again.
So with my size 6 wardrobe and taking pride in my appearance again, amazing how when you look good you feel good, I battled on with treatments I have discussed in previous posts. However, now I have started to regain some of the weight I desperately needed, I have another dilemma. Not quite a size 10 but somewhere inbetween a 6 and an 8. What is a girl to do? So additions have been made to the size 6/10 wardrobe in the form of size 8’s. This is getting expensive and tiring, feel like I have my own branch of topshop with some of my clothes being the same style but different sizes. This would all be very well if I actually had the room to store a stock of 3 different sizes of clothing!
The shopping trips, however, are grand but hoping I don’t make it to a size 12…. Then it would get complicated.