Shiny Disco Balls

What grates on my soul the most about living with RA is having to suffer for any pleasure you encounter. For example, going for a walk or attempting a bike ride with friends, "living it up" at a festival for the weekend or even a simple shopping trip. All enjoyable things yet for the few days/weeks after we may feel pain. This is not to say the pleasure isn't worth the pain. I would much rather spend a few days doing something I enjoy and suffer the consequences after than hold back on joining in just in case.
I am going to have a little dance with my fabulous friends this evening. It's a birthday party and will definately involve me "making some shapes" on the dance floor. To be honest I can't wait. It's so important to let your hair down following the stress of everyday life when living with RA. I can't tell you how I'm going to feel afterwards but "normal" people suffer hangovers right? Well the aftermath and suffering with sore joints is like my hangover.... without the banging head and feeling like you want to vomit.
So a short one, but I say to hell with the consequences, you only get one life and you might as well live it.

my very own waterpark!

Following my hospital admission a few weeks back, my doctor decided it was time my all round care was sorted. For instance, I had never been referred to an Occupational Therapist, Dietician, Pysio and Psychologist before. Apparently this should be the protocall for any Rheumatoid Arthritis sufferer as it is important that all aspects of your lifestyle are considered. I was happy with this, don't get me wrong, however it's more appointments and time spent at hospitals but greatly appreciate that my doctor is trying to help.
The Occupational Therapist is the consultant I wish to discuss today. A very nice lady visited me in hospital to discuss how my condition affects me at home and what help I thought I needed to improve my situation. I had never really considered this before, I have been struggling on with simple things like opening jars, turning on taps and the one that most gets my goat... getting in and out of the bath. Now, when I am at my worst climbing in and out of the bath is like climbing everest. I cannot bend my knees to sit and my arms haven't been strong enough to take my weight and lower me in. (I'm sure you're picturing a comical situation in which I launch myself into the water like a pro diver).
When I mentioned this to her, she informed me it is a common problem for many of her patients who do not have a shower at home (see my step dad was going to fit a shower about 10 years ago but has never quite got round to it). The next step was to refer me to social services (a scary thought for me as I felt like I was being pushed further into the care system but if they could help I suppose I could get on board).
The nice lady came to see me from social services last week to discuss the bath diving situation and came up with some great ideas about how they could help to combat it. She informed me they could provide funding to have a bath lift that I could use at home when I needed help (in the past my sister has pretty much fractured her shoulder when trying to lift me in and out... bless her).
I asked what exactly a bath lift was and what she described can only resemble an inflatible lilo like you would find at a swimming pool. Hmmm, I thought, sounds like fun! They came round to demonstrate it (on a dry run) the other day and it does exactly what it says on the tin. You inflate the seat so that it is level with the bath side, swing yourself over and then deflate it so you are at normal seated level for the bath. Excellent! It's like I have my very own waterpark ride at home! I'm sure this will provide hours of fun for my family.... not that they won't take it seriously!

Lone Ranger....

So how is everybodys' week? Mine has been pretty eventful I must say. I probably should have mentioned that a while back, during the depths of despair when I returned home jobless, in agony and generally feeling like the "crap had hit the fan" (I'm sure you have all been there at some point or another!) I made a decision to take myself off around this big wide world. Now, for someone with RA it's probably not the wisest decision and most responsible way of dealing with things but at the time I had a sort of "sod it" attitude to life.
The plan involved me joining 5 of my friends whilst they gallivanted around South East Asia (Thailand, Cambodia, Laos and Vietnam) and then make our way over to Australia. The trip was to be for 3 months or so. I know what you are all thinking (well those of you who have RA anyway) "How on earth is she going to manage that?" Well the simple answer is, I'm not.
It's a sad fact that those of us with long term illnesses have things to consider when thinking about the future and making plans. Unfortunately my attitude towards this trip was not quite realistic. Don't get me wrong, I had discussed with doctors beforehand and they warned me of the consequences (catching awfull diseases on top of the one I already have, tiredness from travelling, bad food, too much sun etc etc) However I pretty much thought myself invinsible at the time and couldnt see what else I was going to do with my time. It was something to look forward to I guess, something to achieve and work towards. The only thing I had to do was get better...
So now we are a few months down the line and my head is (somewhat) clearer I returned to see the doc yesterday to discuss the trip further. I was due to leave at the end of September and return just before Christmas. Now what I didnt really consider was the new treatment I am on. As I previously wrote about in an earlier post, I had my first Rituximab infusion in April of this year. The doc explained that not only do I need to be closely monitored after my hospital admission a few weeks ago, but I also need to be around in October for the possibility the infusion may start to wear off (you can only have Rituximab at least every 6 months and it works differently for everyone).
If im off on a jolly around god knows where in the middle of some third world country and it starts to wear off, what exactly am I going to do then? I stupidly didnt consider this at all when I booked my ticket. I have spent pretty much most of my life not considering the consequences of my actions but when your health is in mind you really need to start taking some responsibility for it! (or so i've been told).
The fact of the matter is I cannot go to Asia. As much as it saddens me to let my friends go off without me, I need to take this seriously. I can no longer do as I please and expect to be healthy and pain free, I need to do as much as I can to prevent my situation from worsening. This is not to say that I can't still live life to the full though my friends, do not be put off by this. It simply means we have to consider alternatives. For example, I now plan to join my friends on the Australia part of the jolly for 4 weeks (safer, everyone speaks English and it doesnt clash with my Rituximab treatment plan). So there is always a way around things. I luckily have very supportive friends who understand the seriousness of my condition and wouldn't want to jeoporadise that.
Off I go then as a lone ranger to explore the delights of beautiful Australia later this year. Whilst I encourage you to not let your disease ruin your future plans, sit back for a while and consider how you might make things a bit easier on yourself and take responsibility for your own health, no-one is going to do it for you (unless you have a really bossy doc).

to write or not to write... that is the question

Throughout my life I have often struggled to cope with certain goings on. We all have certain "rights of passage" that we must go through and I have had plenty along the way. Good and bad things in my life have always seemed to make more sense to me on paper though, oddly. I find that no matter what I have gone through, divorce (not mine obviously my parents!), trouble at school, death (again not my own obviously) I find it theraputic to clear my mind and write about it constructively. Over the years I have kept diaries, lists, even post its with random scribbles in order to think clearly and "let it all out".
I guess thats what this blog was about initially. Putting down in words my thoughts and feelings so I wasnt consumed by emotions when trying to battle this bloody stupid disease. But (in the words of Sarah Jessica Parker) that got me to thinking... What if I could actually write for a purpose other than this? What if I could write a story or something that people would actually read?
So lately I have been writing some monologue type pieces and short poems (sounds daft I know) and have found it very constructive and theraputic. I am a creative being at heart (hence my education and work background in fashion and advertising) and I find it incredibly frustrating currently not working so I need somewhere to channel all this creative crap!
It just so happens that a certain someone pushed me into sending a piece of my work for submission in a magazine. I laughed of course (I dont believe I am actually any good at this!) but as I have precious little to do these days whilst recovering I thought why not? Well it just so happens that the magazine are only gunna go and publish the damn thing! Shocking, I know. But I am strangely proud of what I can achieve when I put my mind to something. Guess I havent lost my work ethic just yet and a little push is never a bad thing. So ladies and gents, if you fancy checking out my piece it will be published in the October 2010 edition of Platinum Page

To finish off, I encourage you all to channel your pain into something constructive, even if it is a few scribbles on a post it. You may find it helps or discover a new talent...

this one goes out to all the men out there

Now before I begin, many of you may agree or disagree with my theories so I am open to criticism. I wanted to address an issue that has personally affected me since my diagnosis and possibly has affected many of you too. It's not strictly for men, so ladies do keep reading.
I have come to understand throughout my life that men and women react to certain situations in very different ways. In particular change. I have been through my fair share of change from an early age ranging from parental divorce, moving away for university and financial issues. But nothing says change more than being diagnosed with a lifelong condition. Now, in my personal opinion, I believe that men tend to stick with denial. They put on a brave face and attempt to deal with the situation in a macho "I can handle it manner", or they simply crumble and go off the rails a little why they figure out what to do.
This may reflect you as an individual, being the diagnosed, or someone close to the diagnosed such as a partner or friend. In my experience as the diagnosed I have found it incredibly difficult communicating with the opposite sex about my condition. They often dont take it seriously or take it FAR too seriously. For instance, a chap I went on a date with a few months back was the ultimate gentleman. I was wined and dined and we got on great but as soon as I mentioned to him the fact that I had a medical condition which might slightly affect our plans one weekend to trek around a shopping mall for the entire day he disappeared almost in a puff of smoke. Hmmm, was he put off by the fact it may be more difficult to form a relationship with someone who had a disability? Or the fact it may affect his street cred? Because all seemed well until i mentioned that little word "arthritis".
Now I know it is daunting for anyone who trying to get into the dating game, but for us who have a slightly different lifestyle, I have found, its considerably harder. And that is just with a disability thats not really even noticeable. So I wonder how those feel who are permanantly in wheelchairs or missing limbs?!
Are people scared of getting involved with someone who is considered not quite perfect? Or maybe they think they will have to be responsible for you or "care" for you more than others? Well iv'e got news for you lads (and girls if this applies to you) WE ARE PERFECT IN MANY OTHER WAYS. We are normal people who have just had a bit of a tough break in life. We are stronger and more independant because of it too. We deal with pain and challenges every day and you should be bloody proud to call us your other halves!!! (lol). I dont know about you but I find there is nothing more attractive than someone who is strong, confident and can face a challenge.
I have never asked a bloke to take care of me and I never will. In terms of a relationship, and im sure you will agree, all I ask for is a bit of support (and love of course). I know that I am fully capable of taking care of myself and if it comes to a point where I am not, that is my challenge and if you wish to help me succeed then im all for it.
If your partner/someone who you are dating is living with or has been recently diagnosed with RA or some other debilitating condition dont run. If you like someone enough for who they are dont see them for what they cant do, but for what they can do and will do. Comfort but dont smother a sufferer, as a sufferer myself I find sympahthy sometimes makes it worse if you're having a bad day (maybe a cup of tea and some biscuits for your loved one will do better). And for those of you who are living with arthritis, think about how it affects your loved ones too. They may be finding it just as hard as you coping with a change. I know first hand how horrendous it is seeing someone you love go from fit and healthy to bed bound. They need support too. Together is always better so make sure you help each other out through the bad times. I'm all about the love today....

life... but not as I normally know it

It's strange but everything seems to be going well lately (touch wood). I have just returned from yet another week in Majorca (this time with friends) as I figured I deserved a little treat after all the bad things that have happened lately. Safe to say I had a marvellous time, sun, sea and yet more sangria (naughty I know but had to be done and its not like I drink all the time!). I returned feeling even better than before and ready to get out there and face the world again.
I know its horrible for those of you who are suffering right now to read this but I wanted to make a point that obviously things CAN and WILL get better, its just a matter of time. By no means am I out of the woods yet, there is still a long way to go with treatments and therapy but its amazing that when you have felt so unbelievably bad for so long, and it has been horrendous, when you feel a little better, you feel amazing! I am even looking at getting a little part time job, just a couple of hours to get rid of boredom and loneliness when at home in the day but having no luck so far. I forgot how hard it was to find work (it has been a while!) I'm either overqualified, cant do enough hours or the jobs are pants. (will keep you updated on the hunt though).
So just a little ray of hope for you if you feel like the world has come to an end, hang in there a little longer because life is worth living!

Get Stuffed!

Have any of you ever pulled up in a disabled parking space, got out the car and been met by stares of amazement from passers by? I have this situation most days. The one "privilage" of having a disability is the opportunity to park nearer to where you need to get to so on the days you cant walk far or are struggling it makes life that little bit easier. I was accepted for a disabled badge last year and have found it extremely helpful, not just when im driving my super smashing automatic, but also when mum etc have to drop me at the hospital/doctors etc etc. Now, excuse the language, but I dont take the piss with my badge. If im having a good day I park in normal spaces and walk like everybody else. Only when my mobility is affected and/or fatigue/pain sets in do I opt for the saving grace of a disabled space.
However, i am often put off by using the spaces simply because of NOSY, IGNORANT people who think unless your in a wheelchair or missing limbs you are not disabled. I have been asked by car park attendants several times to show my badge and "explain" why I am parking in spaces reserved for disabled people. Well, Car Park Police, you can all do one! I simply respond, its none of your god damn business what disability I have, flash them the badge with my photo and remind them it is against the law to discriminate and intimidate vunerable people ESPECIALLY WHEN YOUR MAIN JOB IS PUSHING TROLLEYS AROUND TESCO CAR PARK.
How bloody rude, and the awful thing is, its not just jumped up staff on a power trip. Its regular everyday people who happen to pass when you step out of the car and look capable of putting one foot in front of the other. Its quite embarrassing at first and you almost feel you are doing something wrong but I remind myself that I have a right to be there and if they dont like it they can get stuffed! Muttering "she doesnt look disabled!". Well ive got news for you ignorant people, disabilities come in all shapes and sizes and are not always visable. I hope you never have to deal with one.

sun, sand.... and minimal amounts of sangria

So ive just returned from my first two week holiday since i was diagnosed. I travelled to the fabulous island of majorca with the whole family in tow and plenty of luggage. As I was diagnosed with malnutrition before i left i had to carry about 60 bottles of nutrition drinks with me and obviously all my other meds on top. Fortunately I contacted the airline before I left and they were very helpfull in letting me take an extra case free of charge to put all that junk in (leaving plenty of room in my case for all my clothes and shoes!). I would advise this to anyone whos travelling with meds as its so much easier.
The flight was fine, no stiffness or pain and i was very excited by this. The last time I flew was when my symptoms first started to appear and I was in agony when I got off the plane. A long day of travelling was followed by a nice meal with the family and a cheeky glass of sangria (has to be done)and a nice long sleep. The whole two weeks I was completely pain free! What a Godsend. I couldnt actually believe it. I relaxed by the pool, went to the beach, shopped and went out for meals and drinks (alot!) and actually felt like a normal person again! They say the sun can help arthritis sufferers and it definately did me. I have returned feeling healthy and refreshed and very positive!
Good stuff eh?