The Best Way to Beat Rheumatoid Arthritis

It's been some time now since I updated our story about living with Rheumatoid Arthritis, this is due to Mary's disease going into hyper mode and creating havoc with our daily lives.

As promised this is part 3 of our story "Living with Rheumatoid Arthritis", if you haven't read part 1 and part 2 I recommend you read them first in order to follow the story.

In the last part I agreed to tell you about anti TNF drugs, new home and new job, first time in a wheelchair and day to day life with RA.

For new readers please be aware I am not offering medical advice nor am I saying your life with RA will be like this, I would like to believe our story is the exception rather than the rule.

If I can offer you anything let it be Hope, rheumatoid arthritis is a disease that can and will be beaten; so hang in there.

All normally successful rheumatoid arthritis treatments has sadly failed to bring Mary's disease under control. The professor agreed to find funding for the trial drug Enbrel (Etanercept).

Today in 2010 these drugs can be prescribed at an early stage of the disease but back then a patient had to have failed to resond to all other treatments.

These biological treatments are known as Anti TNF drugs, Mary was to have them weekly by injection; so far so good. The scary part was that as Mary's hands were so deformed she was unable to administer the drugs herself so that fell to me; not so good. The nurse arrived to train me how to give injections, we practiced on an orange but when it came to Mary's stomach that was a whole new ball game. Over time I did become quite efficient at giving injections; Mary never complained once to me about my technique; especially on injection day.

Gradually these drugs did take effect, day by day Mary did get a reduction in pain and we presume a slowing down of joint damage. Life seemed to be on the up again, we accepted that she would never be cured but any relief was better than none. This respite lasted for about 12 months then the Anti TNF treatment started to be less effective and Mary started to slide back into daily pain and irreversable joint damage, it was around this time that another Doctor recommended Mary had all of her knuckles replaced as they were detaching themselves from her hand; more about this later in our story.

If you have been following our story you will remember that I lost my job and we subsequently lost our home because we couldn't afford the rent; these were very dark times but at least we had each other and the children. As luck would have it after a short period of homelessness and the support of our families we did manage to find a new home. It was smaller than we were used to but a home all the same.

Not long after moving in Mary had an almighty flare up and was hospitalised, this became a regular occurrence over the next couple of years; Mary was rushed into hospital more times than I can remember but we were blessed with very caring neighbours who were prepared to help us out with babysitting anytime day and night; we really did use this support on lots of occasion's.

Never be afraid or embarrassed to let people around you know the problems you are having, you will be suprised at how helpful people will be when they understand the problems you are having.

I didn't plan on becoming a carer; it just sort of happened, in fact I wouldn't describe myself as a carer simply I was doing what any husband or partner would do and was looking after my family.

Looking back I guess Mary and the children did become reliant on me for most things; even some of the most simple basic tasks became a problem for Mary. To give you an idea of what life was like for Mary try and picture this scenario:

Imagine taping your thumbs into the palm of your hands so they are useless (thumb manipulation makes us human), bang your fingers, elbows, shoulders, knees, feet and jaw until they are too painful to use, how much do you think you could do for yourself? Do you think you would need to rely on others for help?

So yes I became a carer, I would be lying if I said it was easy; in the early days it was actually a terrible time for all concerned but we did manage to develop a routine, learn to be patient with each other and recognise that there are many people in much worse circumstances. If we learned anything during this time; it was to communicate with each other. Expecting your partner to understand how you feel or to know what you want is a little naive, they don't. To avoid upset talk to each other, share your thoughts and feelings; it really will make life much easier for both of you.

About 2 years in to being a full time carer I could feel myself becoming quite low in mood, this went on for many months. I realised that the events of the last few years were taking it's toll on my psyche and I decided to find a release; something else to take my mind off the daily repetition of being a carer.

One thing that did interest me was the way Mary coped with being so immobile, if it was me I would imagine I would sink into deep depression; take to my bed and never get up again. Mary didn't and that really made me think about how people deal with life's challenges. I enrolled on a Psychology course to try and find the answers, it did fill in some of the gaps but more importantly through this course I became a volunteer in a citizens rights organisation. I really enjoyed this as not only was it expanding my knowledge it was distracting me from my daily chores, you could say it saved my mind.

This volunteering opportunity led me back into employment, the reason I was able to combine caring with a job was that I learned to plan ahead, utilise as much help as I could from the family and friends but most importantly being willing not to give up when all seemed bleak.

Learn from my experience, becoming a carer doesn't mean giving up on life, it simply means approaching life from a different angle. Caring is a lonely profession if you allow it to be, stay positive and accept as much help is offered.

Mary was issued with a wheelchair early on in her illness due to the fact that she couldn't walk too well, she was determined not to use it because she felt that this was giving up and taking away her dignity; I think she was about 28 years of age around this time so I can understand why she felt that way.

One time we managed to get away on holiday and she agreed to take the chair with her, she agreed because she felt that the children would lose out if she wasn't able to walk to attractions and interesting sites. It was clear that the thought of going in a wheel chair was very upsetting; we discussed it and Mary admitted that she didn't want the children to think there was something wrong with their mum, I did try and comfort her but to be honest no words would have made any difference to the way she was feeling.

The day came to use the wheel chair, Mary reluctantly got in it and off we went on our expedition. The children absolutely loved it, they took it in turns to push it and on more than one occasion had ago in the chair themselves. We had a brilliant day and Mary never worried about the chair again, she still limits it's use today but thanks to the children will never be ashamed of being ill again.

It seems strange writing about these experiences now as they all happened maybe 7 years ago, at the time they did feel like the end of the world; obviously they were not.

In the next installment I will bring you up to date with were we are today. It will include moving house again due to illness, changing jobs and stopping works again, drug trials and failures and Mary's quest to live as normal life as possible.

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