How bad was my Ankylosing Spondylitis going to get, would I end up completely housebound before someone could tell me what was wrong?

If you read my last blog, you’ll know I am now blogging about a period of steep incline in my AS symptoms, although the real issue for me at this time was that I didn’t know I had AS, it was still undiagnosed and fifteen years in.

At this point I had an upset stomach every morning, I’d lost 2 stone in weight. I had headaches which gave me loss of vision in one eye for days on end, and my pupils would dilate differently.  I had pain in my sacroiliac joints, knees, ankles toes, and heels. Until this point I had used a walking stick to help me transfer the weight from my lower body when I was walking and standing, to help me try to continue a normal life. But now I had pain in my shoulders, elbows, wrists and hands too, and so I resorted to crutches to keep me going.

I had to cut my hours at work though because I just couldn’t carry on, I generally got in at 10:30 and had to leave at 2:30 because by 2pm I was dizzy and being physically sick due to exhaustion and I just couldn’t sit upright anymore.

It was horrible, I was really struggling to keep doing my job, I had a mortgage to pay and I was terrified I’d lose my job and wouldn’t be able to pay the bills and I’d then lose my house, and as I said in my last blog, I feared for my life too.

So I had two elements of fear going on in me – one was what the hell is wrong with me – the other was what will I do if I end up completely housebound.

As I said in my last blog I literally haunted the doctor’s surgery to try to get help, a cure, something that worked.

I was already under the pain clinic at the hospital and having three monthly steroid injections, but after nagging doctors, I was then referred to the consultant about my digestive system and started having lots of horrible invasive investigations to check if I had bowel cancer or some other bowel disease. I was also then referred to the clinic to check in case I had a brain tumour because of my headaches and my eye problems.

I spent hours in hospital clinics, and nothing showed anything that explained why I felt so ill, but I still felt ill.

By this time in utter despair when my AS entered my ribcage, on top of all my other pain, and it made it excruciatingly uncomfortable to breathe because it was in the soft tissue attachments of my ribs and my clavicle, I begged the pain clinic to do something more and said I just can’t keep working unless I get more help.

I was already on a high-level prescription painkiller and a prescription level inflammatory, as well as the quarterly steroid injections and a good dose of about five hours of tens machine use a day.

Being the pain clinic the only offer they could make me now – as I’d passed through every rung of the ladder of alternative medicine – was greater pain relief, and the only option therefore was morphine.

I snatched their hands off, I was desperate, I didn’t care about side effects or addiction or anything else, I just wanted relief. I just wanted a chance to keep living a life which had some quality, and a life which meant I wasn’t at risk of losing my house.

I went onto patches, they gave me a slow consistent release of morphine for four days and then I changed them.

Boy they were amazing, this was the first period I’d had of proper pain relief for ages. The only real issue was they made me so drowsy. The doctors had said I was still allowed to drive, but when I drove the 15 minutes home from work I had to have the windows right down and I’d literally be driving thinking stay awake… stay awake… stay awake… So it was only a couple of weeks before I then had to apply for support from access to work to pay for me to have taxis in and out of work, but at least I could comfortably sit in a chair for five hours at work, and I could breathe without agony, although my walking still wasn’t great.

I remember one particular day, when I decided – thinking that the rest of my life was going to be like this, hoping it wouldn’t get worse but not thinking it would ever get better – that I’d reclaim some normality and take my young teenage daughter out for a day. I did drive that day as I had no support for driving in my personal life only help in and out of work.

I was okay when we went out, feeling okay, not fabulous, but like I could enjoy the day. We went to Salisbury to walk about the town about an hour’s drive from where we lived. I started feeling exhausted and sick after an hour (morphine didn’t get rid of those symptoms) we had something to eat in a café. I started getting one of my migraines. Within three hours I felt really ill. I was terrified about how I’d get us home.

We started heading home.

The day was a disaster, my daughter didn’t enjoy it, she was too young to understand my illness with any compassion, she just knew mummy couldn’t do stuff, and trying to do stuff and failing only caused fear and disappointment for her and additional anxiety for me.

I got us home, breathing slowly and trying not to be sick in the car, with all the windows down to try to keep my attention wide awake and on driving. Then I got in and was sick and went to bed.

It really wasn’t any form of life, even though my pain was reduced.

I still despaired. I still didn’t understand. I still wanted answers.

I didn’t know how to get them…

The thing I have found about AS – which really does make living with it seem a battle – is that when you block it in one form, it just goes in a new direction and attacks through another route… So my next blog is about AS’s next assault on me, but that assault was actually a blessing because it was the thing that finally got me diagnosed.

AS is my burden, writing is my escape.

And if you are looking for the best help to improve your Ankylosing Spondylitis then for me it was the AS course at the Hospital for Rheumatic Diseases in Bath, UK. It changed my life (You can attend as a private patient or on the NHS).

Illicit_LoveMy debut novel is due to be published 2nd May 2013 (writing fiction has been my preferred painkiller for years and now I can share my escapism characters).  Sapphire Star Publishing are the publisher. If you want to find out more go to www.janelark.co.uk  like me on Facebook or follow me on twitter @janelark

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About janelark

a writer of authentic, passionate and emotional love stories
This entry was posted in Ankylosing Spondylitis, Health and tagged , , , , , , . Bookmark the permalink.

5 Responses to How bad was my Ankylosing Spondylitis going to get, would I end up completely housebound before someone could tell me what was wrong?

  1. Ted Luoma says:

    Thank you for the post. We are still trying to figure out what I may have. Do you have pain in your knees and ankles?

    • janelark says:

      I do but as I had a car accident and broke my legs too, so I don’t know if that is part of AS or not, but I do know at least one AS sufferer who has really painful knees.

      • Ted Luoma says:

        Wow. On one hand I hope to get a diagnosis, on the other, well, I think I’ll settle for any diagnosis as long as it’s treatable.

  2. Carl says:

    Do you ever get this weird tingly feeling in your whole body from it. It makes it hard to sit still an sleep. It makes your body feel really irritated.

    • janelark says:

      Hi,

      I did used to, but when I said that to the hospital they all looked at me like I was mad. It was when I was using a tens machine a lot though and I wondered if the tens machine caused that feeling in me… :/

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