My name is Kary and I have RA (Rheumatoid Arthritis)

This morning I read a blog post that encouraged us to look for the end of the rainbow when times are tough…

Well 2011 has certainly been a tough year for me, and having thought long and hard about sharing this ‘thing’ that has happened to me and my life, I now realise that it is essential to tell my story.

Why my hesitation in the first place? Well in truth I haven’t had the energy or the desire for long periods of this year, every day has involved accepting and adapting to a ‘new normal’! But a major hesitation has been how would my clients view this, would it affect my business? The desire to always put a positive spin on things runs deep for many of us, particularly in these challenging times. So should I admit I had a problem, acknowledge to myself and others that a life changing event had happened?

My journey

Well after months of deliberating I’ve decided it’s time to tell my story, if only because I know from trying to educate myself about my illness that unforeseen things can strike for many people whatever their personal or professional circumstances.

But the major reason is that the events that have unfolded for me throughout 2011 have been life changing in so many ways; difficult ..hell yes, frightening ..often, frustrating …on many occasions, but from them has come many good things. I’ve found many wonderfully supportive people and this has led to new opportunities that are potentially changing my outlook and the way I do business and I sincerely hope for the better. So if I haven’t yet found the end of the rainbow I’ve started looking for it.

So here goes….Chapter 1.

My name is Kary Backhouse.

My story begins in 2010. With the benefit of hindsight I realise I’d been trying to adjust small aspects, particularly of my working life, since just before Christmas that year. I’d woken one morning with a feeling of pins and needles in my hands and forearms that gradually became a pain as though the tendons in my arms were pulling tight and two fingers on each hand were in spasm. These strange symptoms didn’t lessen as the day progressed, the pain and discomfort started to spread up my arms to my shoulders and after a trip to my Physio she recommended further investigation. Thus began the slow grind of medical appointments and referrals.

At this stage I was totally unprepared for the possibility that I couldn’t work and manage the business; I’m usually in very good health and very independent and in common with many people who work for themselves I work whatever hours it takes to get the job done. My main concern at that time was the seemingly endless process driven health care system necessitating too much time away from the business for various appointments.

So during this time I badgered first the GP, and then the spinal clinic where I was referred, pointing out that if the NHS didn’t get a move on (usually as anyone who has experienced the NHS recently will know, appointments occur at 6/8 week intervals) I’d also be another statistic on the unemployment register as I couldn’t run a business adequately whilst this was ongoing and claiming sick leave, let alone sick pay, was not an option.

However, having made the necessary adjustments to my working life; swopped cars with my partner for his automatic, stopped trying to carry my laptop, I resigned to waiting until tests and results were completed but I was determined that it was business as usual and once the ‘trapped nerve’ was discovered and treated I’d be back to normal.

Fast forward to April and May 2011 and looking back through my diary I appear to have spent much of those months just ’going through the motions’.

During the latter half of April I was beginning to find my mobility becoming severely limited, after sitting in a field on windswept Anglesey, watching the Royal Wedding ceremony on a big screen, the strange stiffening and pain spread to my feet and knees. I struggled to get up from the picnic rug.

The Tuesday after the Bank Holiday weekend I went to the clinic to receive the results of blood tests, every other test, MRI and x ray, having come back OK. The clinician didn’t tell me the figures from the blood test, just that I hadn’t to worry, the sudden onset of symptoms probably indicated an allergy and I’d find out very quickly what treatment could be offered as ‘ the Rheumatologist wasn’t as busy as the spinal clinic’!. They took more blood and I left.

By the end of that week I was swallowing pain killers at 4 hourly intervals and counting the minutes to the next dose unable to do anymore than be consumed by extreme pain, and the acute swelling to every joint in my body, fingers, wrists, elbows, shoulders, knees, ankles, toes they were so swollen they were losing shape and definition. I couldn’t sit, let alone drive, walking was a problem and trying to sleep had become an ordeal; I couldn’t turn over, if I stayed on my back I couldn’t get out of bed. All of which meant an inability to physically function even at a basic level such as showering, dressing never mind walking, driving, working!

The cause of this disruption was the sudden and rapid onset of the debilitating condition Rheumatoid Arthritis (RA). The disabling effects of this disease have left me in extreme pain, often unable to function physically, let alone think clearly and plan for the future.

We were due to visit my son and his fiancée the following weekend, to have dinner and for Mum (Me) to see the venue for the first time, and go over any last minute arrangements.

I struggled through the day, visiting the florist, walking around the venue and gardens and then having dinner. I ignored the concerned faces, this wasn’t happening to me I was fine, I pulled at my food, cutting anything was out of the question, my hands had become useless and resembled bunches of bananas. At the end of the evening I literally pulled myself up from the table in the restaurant and hobbled out to the car. My whole body ached, my hands, arms and feet were swollen and I just wanted to go home and crawl into bed.

Clearly I couldn’t go on like this at a personal or at a business level! I was told about the Burghwood Clinic in Banstead who treat RA via an elimination diet. I took the first available appointment.
When I arrived at the clinic on 16 May I told the Doctor my symptoms and my concerns. I gave the caveat that I knew there were no guarantees with any treatment but I did have a business that required me to be hands on and without which I didn’t have an income, and my first major personal goal – I would like to attend my son’s wedding at the end of June!