Space Cadet

 Urgh... What a crappy few days, if you don’t mind me saying. I have not been my usual upbeat self because, to put it simply, I have not had the energy. It turns out I have a viral infection (again). After days of awful nights praying for sleep, a mysterious rash appeared on my face and neck quickly spreading to my legs. The rash wasn’t alarming, but that combined with an awful metallic taste in my mouth left me wondering what the hell could be wrong now.

 Exhaustion set in over the weekend. I was supposed to be visiting friends and the boy up north for a couple of days, but I couldn’t muster up the energy to get out of bed let alone sit on a train for a few hours. So instead, the boy came to visit me. I am ashamed to say I can’t have been much company. I deal with illness much better now than I used to. I still manage to keep a smile on my face and try not to wallow but I didn’t have much energy to be out and about doing things. I often worry what type of company I truly am after nights of disturbed sleep and feeling generally like death. But surely anyone who is ill feels the same. Simple coughs and colds keep most of us wrapped up in bed wanting nothing more than the TV and a box of tissues for company.

 But as my illnesses are ongoing I cannot perform this ritual all the time. I would get sick of my own company, I fear. I pulled myself together for a few moments to take a trip to the supermarket and it was the most bizarre experience. I was so drugged up on pain killers that I wandered around like a space cadet. I bought two books, which I don’t remember buying. I bought a sandwich, which I don’t remember eating. Then returned home only to pass out for a couple of hours.   

 I know what you must be thinking, ‘poor boy came all that way for me to just sleep and walk around in a daze’. Well I know. And I hate it too. But everyone around me must understand that I can’t be on top form always. I do what I can, when I can.

 The doc informed me I have two huge ulcers in my throat (Ewwww), I had no idea they were there. So the plan is to rest up, recharge and gargle mouth wash to get rid of the nasties. Hopefully with a tad more sleep and generally feeling better my space cadet days will be over. (Well not entirely, I still have my blonde moments).

My Codeine Coma

I approach this subject with great care, not wishing to sound like an addict or promote the use of prescription drugs to those who are not suffering with chronic pain. I wanted to give you an insight into what it is like for someone trying to cope with pain on a daily basis.

Nothing, it seems, warrants me the sweet release of pain more so than a petite prescription painkiller called codeine. On the nights where I wake at some unearthly hour with pain shooting down my legs or wrists as stiff as a board, I gently slip myself into what I call a codeine coma. I have tried several pain killers over the time I have been suffering with RA. I feel like I constantly am popping pills so I don’t like to take more for pain, but sometimes there is no other choice for me. I either deal with it by trying to ignore the irritating sensation that my joints are crying out for help or I take a tablet and hope for the best.

I save my codeine for night time. It is essentially a strong painkiller, however not as strong as some I have taken in the past such as Tramadol which, in my opinion, could knock out a horse. My experience with Tramadol is one of sheer bewilderment and confusion. Yes, it did stop the pain, but the side effects of drowsiness and the feeling of not really being on this planet didn’t agree with me. Codeine comas have helped me through some rough nights really. I can only describe the pain as similar to growing pains. It feels like my legs are trying to grow another few inches but with nowhere to go, restricted by my swollen ankles. So, at three in the morning, I admit defeat. Open my drawer of pharmaceutical wonders and swallow a codeine and paracetemal mixture. I then wait for the fuzzy, warm feeling of relaxation in my tired bones.

There are some occasions where this doesn’t work. My body doesn’t always respond to painkillers and when this happens I have to just accept its going to be a bad day. But when they do work, it gives me the freedom to get on with my day, even if I feel like I am floating for a few hours while they do their magic. My point is that there are lots of things that people don’t consider when it comes to understanding RA. We have to deal with not only the pain, but the side effects of drugs to control the pain and the disease itself. It’s frustrating that sometimes people don’t get it. Saying that you can just pop a few pills to ease your aches and pains is not how it works. There is an aftermath of taking pills, just like my codeine coma, which sometimes means you cannot drive or concentrate, making it difficult to go to work or do anything of any use until the effects have worn off. Weighing up the pros and cons of taking medication is exhausting sometimes and before the argument is over in my head I have usually swallowed the pills anyway and lie in wait for my release once again...

Expressions of Joy and Sadness

Throughout the period of my personal suffering, I have discovered that the ways of expressing misery are infinite. I have often wondered how others express their sadness and pain and if I was being over dramatic when it came to my wails in the night or sobbing throughout the day. My admissions to hospital provided evidence to suggest that everyone copes with suffering in different ways. The older ladies I have often been situated next to in my hospital bed made great efforts to call out to someone, anyone, that could hear them in the night. Others I have come across have shed silent tears in the hope that people won’t be aware of their pain. I have spent days where I have barely been able to stop the flow of tears, which inevitably left me feeling worse with headaches and general ‘puffiness’. I tend to be a mixture of all these expressions. On occasion I have wept hoping that no one will notice so I won’t be treated differently and other times I have been ready to shout to the world my complaints of stiffness and discomfort.

I do feel it is important to communicate your sadness, as keeping it all in is only asking for trouble and more stress on top of your distressing condition.  At the same time, it is also important to express happiness. I have found that your emotional state has a huge impact on your physical health. On my cheerier days, I have felt substantially better just from wearing a smile on my face. The release from a prison of misery is incredibly overwhelming. I have shed tears of joy on the days where things seemed to be going right for a change, due to sheer disbelief I imagine. Mainly I express my happiness by being a ‘normal’ person. I go about my day ‘normally’ to a point where a stranger would not guess I have a crippling condition that leaves me bed ridden on occasions. The feeling that people are treating me no differently than any other young woman they may see on the street is hard to believe, as I know behind closed doors my family and close friends see a different picture.

My emotions are heightened these days, from extreme sadness to overwhelming happiness. It can be exhausting holding all those feelings within an aching and tired body. Relaxation is the key. If you have a bad day, when possible, take some time out and do something that will make you smile even if it’s for an hour. Perhaps a relaxing bath, reading a favourite book or listening to a CD by yourself for a few moments can provide the release of emotional stress you may desperately need. I am not saying this will work for everyone, but for me, the time I settle down and get lost in a good book ensures that for at least a few moments I forget I am the girl with RA.

Almost There

As far as weeks go, this has been a pretty good one. I have been a very busy bee indeed and for the first time in ages I feel like my future is not going to be so bad after all. It has been great to throw myself into charity work and feel like my time is being spent wisely rather than sitting on my bum moaning about how pants everything is. Obviously my illness means there are still limits to how much I can do and I feel exhausted from lack of sleep (I cant seem to switch my brain off to rest at the moment even though my bones are aching for it). I have been overwhelmed with responses from my appearance on the news and on the radio. Although slightly embarrassed at times when being asked by local people if I was ‘the girl on the news the other day’, I am proud that people were impressed.
Not one to get complacent, I had a brainwave for a fundraising event the other night and I quickly got to work with it. I am organising a charity fashion show in February in my local town to raise money for arthritis care, a charity that has been very good to me since my diagnosis. It combines my two passions, fashion and… fun! So I have had a great time thinking of ideas and planning the event from the comfort of my bed (I went swimming the other day and have been suffering with burning hips ever since!). It’s great to see how supportive local businesses have been with donations.
I have also been asked to write a column in the arthritis care magazine which I am thrilled at. Ideally, I wish I could turn the work I am doing into a job but I am aware that working from the comfort of your home where I can rest at any point is very different from being in an office environment working 9-5 five days a week. I hope that I will be ready soon though, and the right part time work will come along to get me started.

I feel very lucky at the moment I get to do what I enjoy, help others and still get the rest I need to ensure my condition doesn’t flare. It has took me long enough to find this balance and I hope it continues. But it does show that you have to hit the bottom, and I did indeed, before you start making your way back up again…

Making Headlines

 So, today has been a massive success for my campaign to create awareness of arthritis in young people. For a while now I have been trying to get the attention of the media by telling my story to ensure that sufferers no longer feel alone. It’s important that the general public are aware of the disease, especially that it occurs in young people too. I am not one for fame, frankly I hate having my picture taken (believe it or not I am not loving the current steroid bloat I am sporting!) but if having my face plastered across papers and on TV ensures that even one person can understand arthritis a little better, then I am all for it.
Today is World Arthritis Day. To help promote this I agreed to do some interviews with regional media, including the Press and Journal newspaper in Scotland, a live radio broadcast with BBC Hereford and Worcester and a feature on BBC Midlands Today news programme. Scary stuff, may I add. I am confident in talking about my disease but it’s slightly different when you have cameras and microphones pointing at you. The radio and TV crews arrived at my home today and were ever so polite. I was worried that sometimes the media have a way of twisting stories to make them look fake (for example asking me to sit in a wheel chair or something which is not how I operate at the moment). But they have all been truthful and realistic in their approach and I am very grateful for their support.
It was great to feel like a little bit of a star for the day, although typically my condition means I am now exhausted from all the nonsense. I have had some fantastic feedback from viewers and readers who have flooded my inbox with their stories and I couldn’t have hoped for more. My mum was unexpectedly dragged into the shots for the news programme (reluctantly) but she did fantastic too! I feel an overwhelming sense of achievement today that I have done my bit to help others but by no means is this the end of my fight to teach the world about the negative and positive aspects of living with arthritis. I hope I have maybe changed some people’s perceptions of the disease.
I find it therapeutic to keep my mind busy. As I’ve mentioned before, being out of work is no fun, so I do all I am capable of in the form of writing and campaigning. For so long I felt isolated and unworthy because of my condition. But through sheer determination, I have got to a point where I am confident that one day I will return to work and do a bloody good job!
So enough from me... I am going to retire to the comfort of my warm bed and sleep off my incredibly long day in front of the cameras. It’s been emotional… Happy World Arthritis Day my friends.

Que Sura Sura

I am a strong believer in that everything happens for a reason, if the ups and downs I have endured over the past year are anything to go by. The bad things have often been followed by good and this is what gives me hope for the future. Yesterday I learned my fate (finally) with regards to my upcoming trip to Australia. It is not good news. It seems that there is nothing that can be done to change my treatment dates. I either accept to have the treatment at the time I should be on the other side of the world with my best friends or decline it against doctor’s wishes and fear a flare up when I am over there (where nothing can be done). The fact of the matter is, if I don’t show for my treatment they have every right to take it off me so I would be putting my future in jeopardy.
As devastating as it is, and believe me I have done more than a bit of sobbing into my pillow over the past few days, the only way forward is to try and accept that what will be will be. On the good advice of my friends and family, if I let this infuriating decision get me down it will affect my physical health. I have to have a good cry, and move on. I have to concentrate on other things to look forward to, beyond my treatment (even though Australia was pretty much the one thing I wanted most out of life this year). Unfortunately it is another knock back in the long list of knock backs that come with being an RA sufferer, but who knows if this was supposed to happen so I could go on to better health and have the trip of a lifetime next year instead? It’s a given I wont have the same experience as all of my friends wont be joining me but I can still do it, just not now.
Apologies for the rant but I wanted to comment on some other infuriating information I have discovered this week…
A conservative MP, Nadine Dorries, urged people on her blog to report those who are claiming benefits for disability and tweeting more than 50 times a day to the Department of Work and Pensions. It is of her opinion that if you can frequently tweet, and be in communication with people through Facebook, that there is nothing wrong with you and you should be at work. She specifically mentions one arthritis sufferer as a case study, the person in question has since defended herself (thank god).
Now, I do tweet, and yes, I stay in touch with friends through social networking sites such as Facebook, and indeed write the blog you are currently reading. Without the luxury of being able to communicate through these methods, I would fear for my mental health. No, I am currently not able to work, due to flare ups and various other medical problems, but it is my intention to do so when I am fit and well. Isolation is terrifying for many arthritis sufferers so I really don’t agree with Dorries’ misguided and, frankly, ignorant opinions. She should maybe spend some time with these people who are possibly bed or home bound. Sometimes their only option, which has been the case for me, is to converse with people over the internet and really… what is wrong with that? Don’t get me wrong, if you can work, you should be working but if you cant, is it of the opinion that all ‘disabled people’ should suffer in silence and not be able to communicate with others for fear of their benefits being stopped? Ludicrous. She needs to be made aware that disabilities come in all shapes and sizes and don’t necessarily mean that the sufferer is in a wheelchair or unable to use their hands to type on a phone or computer for a few minutes.

Hangin' On The Telephone

The last few days have been more than a bit frustrating. I am simply fed up of putting my life on hold for this disease. My plans for the next few months have been put in jeopardy because of the lack of support I am receiving from the NHS. I mentioned before that I was due to do some travelling for a few months with friends around Asia and then Australia. As I was told my next lot of Rituximab treatment would be given in September/October, I was forced to cancel the Asia part of the trip costing me money to change flights etc. So the plan was to catch up with friends to go to Australia for four weeks at the end of November. This, I believed, would leave me plenty of time to have the treatment and recover and would mean I didn’t miss out on seeing a bit of the world with my good friends.
I could not have been more wrong. Having RA and making plans has never really been a good combination for me. I previously have had to cancel a trip to Glastonbury festival because of a flare up, had a holiday in Egypt ruined because of a flare up and now it seems my ingenious plan of going to Australia is going to come back and bite me in the ass. You see, after calling (and calling and calling) the hospital where I am supposed to have my treatment to find out the dates I finally got my answer on Friday. And you’ve probably guessed that it wasn’t good news.
My treatment has been arranged for November the 12th with the second infusion following on the 26th. This is all well and good but I will actually be on the other side of the planet for the second treatment (as I am due to leave on the 21st). What an absolute cock up. I am only going by what I was told by doctors that I would be fine to do the Australia trip and that it wouldn’t take that long to sort out the treatment but I guess this was not the case. I am now fighting to have the treatment moved forward so I can still go on the trip. I am frankly sick to the back teeth of not being able to plan anything because of a flare up or impending treatment. The last thing I needed was a patronising nurse telling me I am not the only one in this position and they would get round to sorting it out when they had time. I have honestly never been so infuriated. When I questioned why they couldn’t do it earlier she was rude and unhelpful telling me simply they would get back to me in the next few weeks. Well that is not good enough.
I am now in Limbo. Unsure of what to do about my trip, as the treatment could be sooner if a home care company can take care of it, and I have no way of knowing what is going to happen. All the while, my trip draws closer and my upcoming plans are facing cancellation if I am suddenly told I can go in and have it. (They have a habit of leaving it till the last minute to tell me what’s going on).
So, once again…. I have no idea what to do and the thoughts of being left behind fill my head. Will this be the way I have to live my life? Always hanging on the phone, waiting for someone else to decide my fate?

Pinch of Salt

I have always had barriers up. I am the type of person who would rather follow up a question of ‘How are you?’ with a sarcastic comment than tell the truth if I am feeling low. I struggle to let people in more so now than ever before. My illness previously left me with little confidence. The inevitable conversation starters when you meet new people are ‘What do you do?’ and I struggled to reply. How can you explain to someone who is being polite that you actually don’t do anything at present because you were recently diagnosed with a chronic illness that has left you bed bound? My usual reply was that I was in-between jobs or doing volunteer work. The same goes for friends that you may not have seen for a while. I was recently at a party and bumped into an old friend who asked ‘What have you been up to?’ Hmmm… how to answer that one when the person doesn’t know the events of the past two years? I don’t like making people feel uncomfortable or sympathetic towards me (which they inevitably would if I told the truth) So, I’d rather spare them the details and bend the truth.
I have come up with all sorts of stories as to what I’ve been up to, such as I was a bit poorly for a while so taking some time off to figure out what to do next. I am a writer now. I went on a space mission and haven’t been around people for a long time. The problem with this is that people then will obviously wonder and question further. It’s part of being a human being to be curious.
The ups and downs I have experienced in my life have left me with a somewhat abrupt attitude. I am not a horrible, rude or obnoxious person. I treat everyone with respect and I am friendly and approachable. But within my comfort zone, amongst friends and family, I like to be straight to the point and sarcasm is in my nature. It’s a form of self defence I guess. Rather than moaning and whining about bad things that are happening I will make a joke out of it. Constant pain, lack of sleep and energy can leave you feeling very out of place in conversation and affects your mood quite considerably. My friends and family know to take my wording of certain things or my mood with a pinch of salt, as they know I am not a bitter person and I don’t mean to offend them. I wish to thank my family and friends for putting up with my anger in the form of sarcasm. If you truly know me, then you will know I mean no harm and on a brighter day I will be my sweet, delightful self… (Ahem).