Sharon Kilty's Arthritis News Column 2006-7

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so much help out there

It was only fairly recently that it dawned on me that having been on an anti-TNF treatment now for some time, I was no longer experiencing the dramatic troughs of a flare and I was more stable. I had not experienced a dramatic improvement but rather a calming down of my disease.

This led me to think about returning to work. I knew that nursing would not be possible but maybe something completely different would be. It was with a little fear and trepidation that I phoned the job centre and was immediately put through to the disabilities officer. Paul was his name, he sounded lovely on the phone so I agreed an initial interview.

I was nervous on arrival; I had never been to a job centre before. Paul was great and immediately put me at my ease. He firstly reassured me that he had nothing to do with the benefits agency so I did not need to worry about my incapacity benefit being stopped. We talked at great length about what I might like to do. I explained that I had been out of work for a considerable amount of time and that to be honest I had lost a lot of confidence.

We agreed that the best way forward was for me to do a work preparation course. This was a six week course of one hour sessions held at the job centre. The aim was to build confidence, whilst looking at skills and creating a CV. For the next six weeks I went in and met up with Rebecca, my course facilitator. We had great fun, looking at job options and quite early on I filled out a questionnaire on the computer which is designed to find jobs suited to your skills. The questions seemed quite strange but the results were fascinating. My top job suggestion was to work as an "advice centre worker" and the second was to be a writer. No surprises with that one! At the end of the six weeks I felt much clearer about the skills I had to offer and what I wanted to do.

Next, Paul and I looked at how my disability might affect my fitness to sustain a regular work pattern. I was concerned that I would not have the stamina to work regular days and regular hours and I did not want to start work only to fall at the first hurdle. I had decided that I would like to try classroom assistance work at a primary school, as I had always enjoyed helping out at my daughter's school. Paul reassured me but also was realistic that I might have to face the fact that I really was unable to work. In a strange way this made me feel better as I did not feel I was being pressurised back to work at any cost. Next time I will tell you how I progressed through the next step and what job I actually ended up applying for. What I would like to say before I sign off is that there is so much help out there, it really surprised me and I'm really glad I took that first step.

an unexpected opportunity

As I described in my last column, having received anti-TNF treatment and experienced a huge improvement in my condition, I had decided I really did want to go back to work after being unable to for 11 years. Having completed a six-week work preparation course, Paul (my disabilities officer from the job centre) and I agreed that rather than jumping in at the deep end and going straight into work, I needed time to test the water.

So the next step was to try a work placement for six weeks. During this time I would see if the job was suitable and test out if I could really manage the hours and duties involved, with support from my personal facilitator Rebecca. She would liaise with my employer and sort out any problems should they arise. And she would speak to me regularly and ensure that I had all the support I needed.

So, Rebecca went off to find a school that would be willing to take me on a placement as a classroom assistant - the job I thought would be a suitable first step back into employment.

However, whilst I was waiting for my placement to be organised, I found out that there was a job vacancy in my area with Arthritis Care. They wanted an information services manager - someone to help people with arthritis access information and Arthritis Care's services. At first I was a bit nervous about applying but with the support of my husband, daughter, my revamped Curriculum Vitae and my newly found confidence I decided I would.

I attended an interview in London and am delighted to say I was successful. Paul and Rebecca at the job centre were really pleased for me. I am now fortunate enough to be in a position where I get paid for something I truly love doing. Telling people about Arthritis Care and providing them with good quality information just puts a smile on my face.

So I never did get to try out my placement, but I did reach my goal. And since being in work the support has continued. Access to Work came and assessed my equipment needs - I now have a special key board and mouse for my computer as well as a laptop that I can use in bed on those days that I am really stiff. My needs continue to be under review and Richard, my Access to Work Adviser, is very helpful and informative.

I am very fortunate to have been able to return to work and I really love it. However, it would not have been such an easy task without all the help and encouragement I have received. Every disabled person who wants to work should receive this kind of support to make work an achievable goal.

accessible bathrooms

Well here I am back on an old soap box again, but this time I am truly foaming at the mouth. Why? Because the solution is so simple. In recent months I have had occasion to stay in hotels over night so that I can be fresh for the next day. The first time I booked a room I booked it on the internet and ticked the box for a disabled room. When I got there I discovered that there was nobody to help me in with my bags and nowhere to sit in reception whilst queuing to book in. Eventually and painfully I managed to book in and get my key. After flopping on the bed for ten minutes to recover I began to explore my room. The bedroom was great, easy to get around and everything within easy reach, then I went into the bath room, and would you believe it there was a bath with a shower in it and a very dodgy bath seat that looked dangerous to me.

I spoke to the manager and explained that a bath was hardly suitable in a disabled room and that what was needed was a wet room shower with a shower seat. He agreed and said that a lot of people with disabilities had complained and as a result the hotel company was looking at upgrading the room, I suggested that in the mean time they should make it explicit on their website that these rooms have baths in and that way people could be better informed when booking a room.

After this experience I realised that I would need to check with every hotel before booking and I have been shocked to discover that the majority of disabled rooms have a bath with a shower in it. Is it just me or is this ridiculous, I don’t know about you but I haven’t been able to get in and out of a bath for years. Why is it still so difficult to get something as simple as an accessible bathroom?

I have learned the hard way that you always need to check what a disabled room actually means as disabled does not always mean accessible. How can this be? Surely a disabled room by definition should be accessible.

The best and most accessible rooms in my experience are in brand new hotels as they tend to have a free standing shower as standard in all rooms but these are small and often have a high step to get into the shower. I really wish that designers would get professional help from disabled organisations when they start planning bathrooms for people with disabilities, it's not that difficult to build an accessible bathroom, if I can do it anyone can.

When I designed my new bathroom at home I got in touch with my local mobility centre who were able to provide me with brochures on bathroom furniture such as raised toilets, large shower trays and wall mounted shower seats. I did not need to order special taps as most bathroom shops now do taps with levers to turn them on and off as they are very trendy. After discussing my needs with my builder we ordered all the necessary pieces and that was it. I have to say I love my new bathroom I only wish I could take it with me when I go to stay in hotels.

a pain in the neck

In recent months, I have begun to have problems in my neck. As with all the new symptoms that I have experienced, I have found it dificult and frustrating at first to adjust to the changes that this symptom means in daily life.

Each new joint that is affected seems to set up a whole new gamut of problems to overcome. With my neck, the biggest problem has been getting jumpers on and off.

Consequently, when it comes to getting dressed and undressed I have presently given up on any clothing that is even remotely restrictive and needs pulling tightly over my head. I confess that, presently, I am living in long sleeved T-shirts that are two sizes too big and baggy cardigans.

Having said that, this is what I do. I do occasionally forget to follow my own guidelines and end up getting into the most ridiculous situations. For instance, I recently stayed in the most lovely hotel and got dressed up for dinner in a really pretty pull over blouse and trousers. I merrily went off and had a very enjoyable evening.

On returning to my room at a late hour, I very quickly realised that it was going to be impossible to get my lovely blouse off and my husband wasn't there to rexcue me. My neck had become stiff and painful during the course of the eveningf and what I needed was to reest it.

Wrestling with a blouse was not going to improve things but I wrestled with it anyway. I must have looked a real sight, struggling and muttering under my breath, all to no avail. After about 10 minutes of sheer frustration, I realised that I was not going to remove the blouse without resorting to using a pair of scissors. This solution did seem a little drastic, so to give myself time to recover and think laterally, I had a cup of tea.

Whilst supping my tea, it became obvious that I would have to sleep in the blouse and hope that resting my neck and myself would enable me to sort things out in the morning.

Thankfully, after a good night's sleep (thus allowing my por muscles to relax), another cup of tea and some painkillers, I was able to calmly and slowly remove the offending blouse without too much discomfort the next morning. Since returning home, this blouse has been put in the wardrobe in the spare room, just to ensure that I don't get myself in such a pickle again.

I love nice shoes

I have noticed over the years that when I choose clothes and shoes, I have become increasingly practical and less and less fashionable in my choices. I have got round this easily with clothes, as I know I can easily get on and off and there are always loads to choose from. Shoes have proved more difficult and consequently I live in mules – not very girlie, but they are very comfortable.

I know being practical is sensible, but there are times when it is important to hang on to the things that matter to you – and I love nice shoes.

Although this may not seem very important, it has meant that even when I do dress up, I never feel really good because of my ‘practical’ shoes. So recently I decided to try and get to grips with this issue and find something pretty that I could feel good in.

Of course, with arthritis in my feet, I knew this was not going to be easy. I also did not want to pay a lot of money for them as I know from past experience that something that feels comfortable in the shop can turn out to be torture when you get them home. I got a lovely pair of shoes from Marks & Spencer, who now do a wider fitting range. They are very comfortable, but are not that easy to get on and off.

So, my first attempt as not a total success – I had not really thought through all the practicalities.

I was determined not to give up, so I sat down and thought through what I really needed from a show to be practical (like my mules), and then applied this principle to fashionable shoes. Finally, I found a pair on eBay, of all places, and placed my bid. I got them and they are fantastic: they are pretty and they don't make my feet sore. I really enjoy wearing them and I feel great in them.

It is stupid I know, but when you have arthritis and you have to adapt your lifestyle, it is easy to lose sight of the little things that really do matter and make you feel good about yourself. This experience has reminded me of the importance of holding on to those things that make you who you are and help you express yourself in the world. It doesn't matter what it is, if it is important to you, find out how to hang on to it.

Overdoing it when I want

Don't you just get fed up with people telling you to take it easy and don't overdo it! I mean really overdo what? Sometimes I just want to say, “I'll over do it if I want to so mind your own business”. I know they mean well and it is their way of saying that they are concerned about me and care for me but there are times when I have had enough.

As if taking it easy is going to cure me. Sometimes to be honest I like overdoing it because at least then when I am lying in bed feeling extremely uncomfortable as usual, I can look back on all the things I have achieved during my mad bout of overdoing it.

The problem is, if I wrap myself up in cotton wool and I am constantly pacing myself and taking care, life can become a bit boring and on retiring to bed there are no memories to reflect on and nothing to look forward to.  Life can become a bit bland and life is something I cherish. I am not suggesting snow boarding or bungee jumping just that sometimes it's fun to get up early, go out all day, have a lovely meal in the evening or go to a show and roll into bed completely shattered and in pain.

I am not completely mad – if I am honest I do plan my recklessness to some extent. I will look ahead and find a couple of days when I could stay in bed if I need to and then allow myself to push the boat out knowing I have some recovery time. Saying that makes it all sound very sensible again and I guess after all these years I almost automatically build in a safety net, but it is nice to push myself every now and then and live on the edge a little. Let’s face it I'm only human after all.

I recently had a bout of overdoing it when I took my 13 year old daughter and her four friends to the Eden project. We had a wonderful day, being silly and making sure we saw it all. On returning home I cooked them all dinner and they all stayed for the night. In the morning I got up and made them all breakfast before they toddled off home in the early afternoon. I was exhausted but it was so worthwhile: the girls all had fun and I have the pictures to prove it (as well as the sore joints).

Thankfully, I was able to relax in the afternoon and go to bed early leaving my beloved husband to hold the fort. It was so worthwhile and worth all the extra aches and pains to build those memories that I can look back on when I have bad days. Of course it would not be so easy without the support of James my husband, who is happy to support me in my bouts of overdoing it.

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