A pain in the...... Actually it's easier for me to list where it isn't a pain! (My Experience of Arthritis)

Name: rune_tune

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Product:	My Experience of Arthritis
Date:	16/03/08 (147 review reads)
Rating:

Advantages: I am still very much alive and still breathing!

Disadvantages: I live a daily life of pain

A pain in the...... Actually it's easier for me to list where it isn't a pain!

~ The early story ~

A little background which I hope will just show why I didn't immediately begin to suspect there was anything too seriously wrong with my health, much less that I had arthritis.

From the age of 12, we lived in a remote country house (our nearest neighbour was a mile away). It was also a house that hadn't been lived in for 7 years before my parents bought it and so we lived in constant house renovations for 5 or 6 years. A house that meant my sister and I were fortunate enough to have a pony, and we spent many hours outside, either helping gather the wood to heat the place (we didn't have electricity for the first 2 years), or mucking out the stables, to just running amok through the Beech Tree wood that ran alongside the house and up on the hill that shot up behind the house to 1,200 feet above sea level.

It meant we had an active lifestyle, and for various reasons this carried on through our adult lives, and we still did things that were a little unusual. I spent 5 years for example winch-launching Gliders as a living!

~ The early problems ~

So, around 12/14 years ago, in my late 20's and early 30's I just put the stiffness I was beginning to feel in my hands as I worked down to the sort of jobs I did. It wasn't cause for concern.
My knees were also beginning to trouble me, and again I put it down to a very serious injury playing hockey that I had when I was 17 that left me on crutches for 9 months.
I always had a problem with some swelling on and around my left knee, and thought the pain I was beginning to experience in my right knee was just because I had been compensating for the slightly weaker knee. Again, it was nothing to worry about, or so I thought.

And I'm a stubborn and independent bugger, so I just stuck my head down and carried on as I always did. After all, I had rationalised what the problems were and I was always getting aches and pains because I was so active with jobs, whether it was DIY, using our chainsaw or just walking the dogs.
I remember vaguely mentioning it to my GP, but I was swallowing some painkillers anyway and they said there was nothing more they could do.

~ The Middle problems ~

About 7 years ago, I began to realize that my aches and pains were more than just a result of the general day-to-day life I had been living. So, while at the doctors for something else, I decided to mention it. Particularly since I had been suffering more in the knees and it was starting to affect what I could do.
My GP did an assessment including some blood tests, and decided there was more going on than just general wear and tear and referred me to the local Rheumatologist Specialist.
So after a wait, off I trot (or in my case, limp) to them and hope they might have some answers for me.
Unfortunately to begin with I was effectively dismissed by the specialist because I didn't have one of the main arthritis conditions showing up on the tests he did. *see later to show what these are.

I wasn't convinced, and to be honest neither was my GP, and so for a number of years I was left in limbo, knowing there was something wrong, progressively getting worse, I had my GP also agreeing with me but the local Specialist just saying it was wear and tear and there was nothing they could do and sending me home again!

But three years ago, I moved counties and came to live Oop North. So, once I had registered with a new GP, I sat down with them as we reviewed my previous medical history and they also agreed there was more to my problems than I was being told and sent me off to the specialist up here.

I was apprehensive about it this time around, having been told there was nothing wrong before but how wrong was I!
They met me, and within the first meeting sat there, looked across their desk having done a quick series of tests on me, and reviewed my latest blood tests - and just simply said, "You have Arthritis".

I admit I was stunned to begin with. Finally after nearly 10 years I had someone who not only agreed with me, but also began to give me full explanations as to the different types of Arthritis, and while she wouldn't give me a firm diagnosis as to the type I had until they had done further tests, she was positive it was Arthritis causing me trouble.

I, like a lot of other people had only really heard of 2 main Arthritis types - Rheumatoid and Osteoarthritis.
I then found out there are more than 100 to 200 different variations of Arthritis, and one of the most common apparently is Psoriasis, which I was shocked to hear about. And since my father is a Psoriasis sufferer, it could mean I was and it hadn't shown itself yet (my fathers didn't really begin to show until he was in his late 40's and apparently that isn't uncommon). It could also mean you can get the Arthritis and not show any of the skin complaint and there is an established genetic link.

The Psoriatic Arthritis was dismissed pretty quickly though, and so they began to look elsewhere. As I've said, there are between 100 and 200 types of Arthritis, not all named as such but linked as a 'type' of arthritis. But there are still main 'groups' that they look at first, mainly being Rheumatoid, Osteo and Psoriatic.

Mine was finally diagnosed as being 'like' Rheumatoid Arthritis, and so I now have treatment that would be the same as if it were Rheumatoid in nature.
From the first meeting I had with the specialist, I was in hospital having treatment as an in-patient within two weeks, and for the first time in a very long time I felt vindicated about all my previous complaints about the problems I had faced.
To be fair, my current specialist wasn't overly happy I had been ignored simply because I didn't present outright symptoms for one of the 3 main causes of Arthritis and I believe made a formal complaint to my previous health care trust over it all.

~ The present ~

Unfortunately the arthritis, while not damaging my actual joints too quickly, does cause a lot of swelling, pain and loss of movement in most of my major joints. This is compounded by Osteoarthritis that has now begun to develop in knee and hand joints as a result of the sort of work I've done in the past.
I have to walk using sticks now, and often find day-to-day jobs around the house exceptionally difficult to achieve without aids or help.

I can also get flare-ups, which are fast and uncontrollable when they occur, and they happen on a daily basis. But I have a diagnosis and that was always half the battle for me. Now I know what I am facing and can do things to help it!
I can no longer take Anti-inflammatory medicines like ibuprofen since it upsets my stomach too much after so many previous years of taking it. I did then try the newer versions of NSAID's medication, known as Cox-2 inhibitors, but again they didn't suit me and so I had to come off them very quickly.

Steroids were an option but since they don't like using them long term, after discussions it was decided I would have local injections in certain joints on occasion, but not have tablets unless it was last resort.
Currently I am on strong painkillers and what is known as a Disease-modifying medicine (DMARDs) - Mine is Sulfasalazine, but there are other types.

~ Day to day life ~

My biggest problem was having to slowly but surely accept I cannot do jobs I used to think nothing of. This was particularly hard because as I've said I had always been outside, or inside working on the house or garden. I wouldn't think anything about taking our dogs for a 4 mile hike in the hills, whereas now I can't even take them more than 400 meters without a problem.
It was very much a change of thinking I had to adapt to, a way of life I've had to accept is no longer possible and that took some getting my head around. I found it pretty depressing at times, frustrating as well, and also just degrading for me since I had always been pretty independent. Suddenly I was relying on my partner for help on what I considered silly day to day things - like struggling to pop a painkiller out of its packaging, and needing someone else to do it for me.

On the upside, because I have finally been diagnosed I now have far more help than I was ever able to get! Occupational Therapists came out to my house within 24 hours of being released from the first hospital treatment I went through to give me some devices to help me around the house, while Physiotherapy was also more readily available through the specialist with far less waiting times than I had to endure previously.

I also get regular appointments now to catch up and monitor my condition which means we are a lot more pro-active in any changes that might be needed to help me, whether it's a change of treatment or additional help I might need. My last visit for example changed the walking aids I had to ones more suited to my day-to-day needs.

~ And now? ~

It's never going to improve, but I do actually feel pretty upbeat about the future. I know what I am facing now and so I can plan things to help me whereas I had been flying blind before, possibly not helping my condition by doing jobs, which caused more problems without me realizing what was happening.
I am though currently fighting to try and get additional help financially. I held back (partly through pride) on benefits until I've had to finally admit defeat and that I can no longer work (even typing this out has taken an age and will be all I will manage today). But, its not an easy process, and even with the doctor and specialist giving me full backing (both saying I could have done it sooner) I'm still not getting anywhere fast with it all. I've got the determination to keep going with it, but it is disheartening and I can understand why so many benefits are left unclaimed by people who are in genuine need.

I have to also say I have never had any problems as a result of my disability when out and about. Far from it in fact, with people being far more patient and polite now I am using sticks to get around than before where I would get jostled and would often lose my balance when out because people just had no idea I had problems because outwardly I look 'normal'. So I find people will often hold a door open for me, or don't try to push past me in a hurry like they used to.

I had one incident though, which made me laugh afterwards - a local cashier in our Woolworth's decided to raise her voice and talk ever so s l o w l y as if I had some learning or hearing disability just because I had my walking sticks! I politely told her I wasn't deaf or dumb and she could talk to me in a normal manner. After blushing and apologizing, she carried on as if I were a normal customer, although I did say it was nice she thought about it, but she admitted she shouldn't have assumed something. We see each other fairly regularly while I'm shopping and have a chat and laugh about it all now.
I can't do a lot of the same things I have enjoyed before. I have had to adapt how I go about day-to-day duties, and often it's the smaller day-to-day stuff I would never have even thought about being a problem before is where I tend to still find I get frustrated, but overall I've learnt to live with it and I just plan days very carefully indeed!

~ The Future ~

It doesn't have to be the end of my life; I just have to embark on it in a different way on a slightly different journey to the one I had taken before.

I, like everyone else can't foresee what is going to happen, but I've always been a pretty positive, glass is half full type of person, and while I can struggle with tasks I am grateful and hold on to what I do have dearly.

Arthritis doesn't mean it's the end of what you can do - just adjustment in how you might do it.
It's a rocky road at times, but I am still able to travel it and that's what is important for me.

Edited to add: I finally was awarded DLA and did a review about that experience. Unfortunately while its supposedly been simplified, it is still a very trying application to go through, but worth it in the end.

Summary: Its not the end of the world, but the beginning of a new journey.