end of May 2014
It's taken me a while to get back to writing this, mainly because now that I am on the Anti-TNF treatment and finally understanding how important taking pain relief is, I have a life to live. I still have to Pace and manage my condition, in fact as I type I'm in a Flare which even with all the medication is extremely painful and sore. The difference is that I can function within the Flare a certain amount anyhow. It reminded me how lucky I am that I got to find out about the RNHRD in Bath, I cannot imagine the state I would now be in if I had just accepted the first Consultants off hand diagnosis.
The first appointment I had at The Royal National Hospital of Rheumatic Diseases was pretty amazing. I had had soooo many appointments with various different doctors on my journey to diagnosis, each time feeling that I was having to persuade them to believe me when I told them the amount of pain I was in. Until of course I ended up in the Intensive Care Unit after that I think it was pretty obvious I wasn't bleating about nothing, but really should you have to be hooked up to all sorts of machines, having Dialysis and Human Plasma Exchange before someone believes you.
Anyhow here I was at my first appointment having no idea what to expect. My first impression was how friendly and kind everyone is down there. I first had to have my "measurements" taken in the Physiotherapy department, which is just next door to the main building. Then I saw one of the Consultants team. What a revelation, No hurried allotted ten minutes this. Starting at the very beginning we went through my history and discussed all the present symptoms, at the end of which I was told I would get a date for the Rehabilitation Course soon.
I was scared stiff. The morning arrived and I did not want to say Goodbye to Charlie. I actually clung to him and sobbed. But as scared as I was I also knew I absolutely needed this course.
Aside from the NASS group (and I think at that point Charlie was taking me to those) I hadn't been able to do anything alone. I was suffering from terrible Fatigue. My brain would fuzz up with cotton wool at the drop of a hat, I would slur my words when I was overtaken by it and I wasn't able to walk very well. So to leave his side and be self sufficient for 2 weeks was scary,even as a resident within the Hospital.
The first person I met in the shared apartment allotted to me was Kate. We hit it off immediately and have remained good friends.
One of the aims of the course is enabling you to meet others, and from that I met really nice people, 2 of which are real friends that I email, text and phone to have a laugh and a moan with. I've also called them in absolute distress in a Flare and they've both helped me enormously. I hope I help too, even if just an ear. It means such a lot to me to be able to talk to people who absolutely and totally get it. With the best will in the world my husband, daughter and close friends cannot possibly know what it feels like to have every movement and effort hurt you, and I have brilliant support from Charlie, my daughter Zoe and my close friends. But its so good to have a blooming good moan to someone who knows exactly what its like, then we laugh at ourselves and each other and its all good.
For 2 weeks we learnt about our condition (little did I know the journey I was embarking on, writing this now my disease has progressed and I am so very grateful for that Course), we exercised daily throughout each day. It exhausted but also exhilarated me. I was able to go just across the road and have a coffee, by myself or with new found friends, I was gaining confidence and strength along with knowledge. I wasn't able to go out often as the Fatigue meant each lunchtime I had a snooze and at the end of most days I just wanted my heat pads and to lie down. But I did venture out on a few occasions and again it was great to be out in the big wide world again.
There is no cure for AS but there is treatment and daily stretches and exercises which help (to a greater or lesser degree_I've added that bit because AS is different for everyone and someone out there maybe reading this and thinking No it dosn't help me, if that's the case I don't want to pee them off anymore than they may feel pee-ed off at that moment)
The biggest most beautiful help of all is Hydrotherapy. OH Wow , if you have AS and have never been into a Hydrotherapy pool, find one and go. It is amazing, even if at first you can't exercise, just get in that warm wonderful water, rest back on floats and let your body relax. Ask your GP or Physio to refer you to the nearest NHS hydrotherapy. Or, again go to your local NASS group, they will have access to a hydrotherapy pool (at least most of them do), they also have trained Physiotherapists at each session.
I won't go on and on about every aspect of the Course but I will say that it covered every thing, I even took advantage of the Counselling sessions. There was no way I wanted to end up bitter and angry but there were issues that I had. It really helped, especially coming to terms with the fact that I was actually grieving for my old life and energy, and how I thought my life was going to pan out before it kind of, just stopped dead in its tracks. I'd wanted, and had made our daughters growing up my priority, the plan had been that when she was an adult I would then start entering National Art shows , I'd made a start getting a rejection from The Royal Academy (but hey at least I'd entered), accepted by The Woman's Society Annual show at The Mall Galleries and I'd wanted to pursue this, but my energy had started to fail and then Whoosh swept off my feet with AS. I had to learn to accept it, all of it, the loss, my new life , coping with chronic pain etc etc.
And this Course helped me enormously. Not least because here I met the Consultant who really understands AS and now at last I felt in safe hands.
And now I absolutely have to stop because even with many breaks this has been a marathon for me in a Flare but I'm glad Ive written it and as Ive said before if it helps just 1 person then its more than worth it.