More physio...

Last Friday I went for my second physio appointment.

The physio was really pleased with me and said I was far ahead of where she would expect me to be at this stage.  I have been pushing myself though.

We've had to change some of the exercises due to the arthritis in my other joints.  I have to lift my operated arm with my good arm but my good arm isn't strong enough so my mum has been helping me to lift it.

With my mums help I've managed to get it moving.  I'm so pleased that I'm getting better.  The physio said that it wouldn't be long before I can do things for myself again so that's given me hope.

I've got a few more exercises to do but I've not been doing as much physio this week, but I need to get back to it.

Shoulder Resurfacing 2 weeks on, a little late I know

A few weeks ago I went my first physio appointment since the surgery and then I had a 2 week check up with the consultant straight after that.  It went really well although this is when I have to get my arse in gear, no more sitting around!

I saw a lovely physio called Rachel who was really nice.  She asked, as they always do, about work, I guess she's trying to get me back to normal life as soon as possible.  Rachel gave me about 6 exercises to do at home.

I had to take my sling off for the first time since the operation; it felt really strange at first.  I quickly got used to not having to hold my operated arm with my with my other arm, it felt a little uncomfortable but not painful.  The exercises weren't as painful as I'd thought it would be, I was prepared and took some oramorph before I went to the hospital.  My shoulder moved quite well although it was difficult to move it and the scar felt like it was going to burst.  I felt that the joint did move further than it had done before which I'm obviously pleased about.

I was told that the rehabilitation would take around a year and I am really quite disappointed about that.  I just want to be able to dress myself again.  It's so frustrating to have to wait for my carer in a morning and I'm getting really fed up of them coming in really early.  I have 8am starts most weekends which would be fine but I have to be up and hour or so before they come in so I can have my tablets before they get here.  It also means that the whole house has to get up early and when I have a quiet day at home being up so early makes the day seem never ending.

After I went to see the physio I headed off to see the surgeon.  I saw a different surgeon to the one who did the original consultation but it sounded like he was in my operation too.  I get the impression that they don't do shoulder resurfacing very often so they all came in to have a look!  He said I could start back with everyday life as best as I can.  So I can start driving and having a shower again which I'm most pleased about.  The surgeon also told me that I don't have to wear my sling anymore and I just have to wear it for 'comfort'.  It feels kind of weird without it, but amazing at the same time.

So now just to do much physio as I can and fingers crossed I'll get back some sort of movement.

Shoulders and flare ups

It’s quite common for someone with arthritis to go into a flare after surgery and I think I might be about to have one.  Only this time I don't think it's got anything to do with the operation but I think it could be because I need my medication.

I have a Tocilizumab infusion every 4 weeks and I went for my last dose on 15th December, which means I was due my next one last Thursday.  Unfortunately, I can't have my infusion until 2 weeks after the stitches have been taken out.

The medication lowers the white blood cells and white blood cells fight infection, therefore isn’t a good idea to lower the immune system whilst trying heal.  This would be fine but my body is now feeling that it needs the medication.  I can always tell when it's time.  I sleep more and just generally feel achy and fluey, 2 really common symptoms of Ra.  My infusion is booked for 3rd February so not too long to wait now.

Wondering where I go from here

With this in mind I thought I'd tell you about the work I do for AC.

When I was 11 I went to a meeting at the Cannock branch of Arthritis Care with my Mum.  My friend Chris was there who at that point was looking into starting a group up for younger people.   In those days we had Young Arthritis Care, a sub charity which ran along side the main charity.

I didn't really have much contact with Chris and the others until much later when somehow I was asked to do some radio interviews on behalf of Arthritis Care and Chris sent me some information to help me through it.  My Mum, Dad and I took a trip to Bush house in London where BBC World Service is broadcast from...yes I was 15 and I was on BBC World Service!  The program was called Megamix and was dedicated to teenagers and the issues that affect them.  The program was broadcast to around 40 million people worldwide.  The interview was with a guy from Blue Peter and took around 10 minutes.  I could see my Mum and Dad's faces through the window to the side of the studio and I think they were pretty proud of me.  It all went very well and I was very pleased with how it went.

Over the next few years I was involved in Arthritis Care by doing some radio interviews for local stations including Radio Stoke.  I also sat on focus groups for YAC and went to positive future workshops with other young people with arthritis.

At 16 Chris got back in touch with me and asked if I would like to become a member of North Birmingham Young Arthritis Care, a new group which she and another friend Nikki were trying to set up.  I became a member and soon joined the committee.

At 17 I became a local contact for young people.  I didn't like doing this very much and really wish I hadn't taken it on.  I suppose I'd been talked into it really.  I never felt like I did that much as I was always at school when anyone called, I don't think they realised how old I was.  I always felt like I was letting Arthritis Care down when I couldn't manage stuff.  Whenever I went on a training course I always had to arrive late or fit it in around school.  It was a good job I could drive by then as I was able to go straight from school.  Sometimes I would have to take schoolwork with me any trying to fit it all in was really difficult.

As Young Arthritis Care fizzled out so did the contact role but I ended up joining the Regional Committee which I still do and I'm now the vice chair.

When I was at university I would often be asked to do media work.  One particular Wednesday in April I had a phonecall from Arthritis Care head office in London.  I was rather surprised when they asked me if I would like to go on GMTV to be interviewed by Lorraine Kelly.  I straight away said YES, absolutely.   As the phonecall ended I ran into my flat mates and told them about it, they were really excited.  The experience was just fantastic.  We filmed for what seemed like hours the following Sunday and my feature was on the TV on the following Tuesday.  It was great fun, I was obviously nervous because it was live but it was great all the same.  Calls to the helplines at Arthritis Care increased far more than they ever thought and I'm so pleased I did it, if I encouraged one person to pick up the phone and get some support that day then it was all worth while.

After I finished university I was looking for things to do as I wasn't well enough for full time work so I was asked by my old friend Chris I'd I would join the local committee again. I went along to my first meeting at Cannock branch and offered to take the minutes to help Chris out. I emended up being the secretary and have been doing it for around 6 years. I also write the newsletter along with my friend Seona. We also do a lot of awareness days at the hospital where we give out information to the public and tell them about our support group.

I hope my work doesn't come to an end as I feel I can be a value to others with rheumatoid arthritis.

Changes in Arthritis Care

Before Christmas I went to a rather sad Arthritis Care Meeting.

Arthritis Care, like many other charities are having financial trouble.  Charities rely on donations, legacies, sponsorship etc, and in this climate the donations coming in have dropped dramatically.

Our problem is that we're not a sexy charity, you can't die from it, and it's not a children’s charity, therefore not sexy.

A business plan has been drawn up which will hopefully pull the charity out of the deficit that we're in, but unfortunately some staff are to be made redundant.

Here is a link to a statement on the Arthritis Care website.

http://www.arthritiscare.org.uk/NewsRoom/Latestnewsstories/planning-for-2012

I'm obviously really upset for the staff members who work so hard to make a difference to the lives of so many people.  I feel sad that they, along with many others at this time, have had to go home and tell their families the news that they might not have a job soon.

Staff might rely on this charity financially but us volunteers rely on it emotionally too.  Arthritis Care has been in my life for such a long time I couldn't imagine not doing it.

Over the last 15 years Arthritis Care has been a massive part of my life and I have treated it like a job.

The best thing about volunteering when you have an illness is that everyone understands if you can't make it on a particular day because you’re not very well.  Volunteering gives me a sense of pride in the knowledge that I am helping support people in community when they’re struggling, something which I know most rheumatology staff at our local hospital value.

I know I would be sad if this all ended and I strongly believe that the NHS will have to pick up the fallout from patients who can't get to talk with anyone with living with arthritis or a musculoskeletal condition.  I believe that if patients don’t have anyone to talk to, who understands their situation, then their health might suffer.  People with any long term condition need to learn coping strategies or 'tools' to manage their condition effectively.  Also some people don’t like to talk to family and friends as they don’t want to upset them or they feel like they’re moaning.

I hope this isn't the end of the work I do, maybe it's a new beginning.  Whatever happens I'm always ready to help people with this condition, whether it is in person, at the branch meetings, on the Arthritis Care forum or on twitter.

And lastly, I would like to thank everyone, staff and volunteers for all their hard work and dedication in helping people with arthritis continue with their lives.   I hope the charity will continue to give others as much support as it's given me.

Billy

I'm afraid I have some rather sad news. Our beloved pet Billy the budgie passed away early on Tuesday morning.

He fell ill on Monday night and we did our best to keep him comfortable. My Mum and Dad stayed up with him and we think he died at around 3am.

He found us in April 2002 when he was flying round at my Dad's work. By morning he was hungry and exhausted so my Dad bought him home where he's been ever since. We advertised for his owners but no one came forward to claim him.

He's been all over the country in my Mum and Dad's caravan and he enjoyed a trip in the car very much, whistling all the way. He also enjoyed music and whistled along to whatever we had on or whatever was on the telly.

Some people laugh when you tell them you have a budgie. When our last budgie had to be put to sleep people laughed when I told them. The reality was, the hours leading up to going to the vets we're horrendous, no one would want to see their animal in that way and I'm sure they wouldn't have liked it if they were on the receiving end of their jibes. I wouldn't laugh if anyones pet is put to sleep.

Our home is a rather quiet and a sad place at the moment. My only thoughts are that we saved his life once when he was starving and had no one to look after him, we weren't able to help him again. But while he was here with us we made sure he had a wonderful life.

One week post op

Yesterday I had my dressing on my shoulder changed.  It wasn't painful but it did make me feel a bit funny.  The nurse said that it's a beautiful wound which I was really pleased about.  I've always been good at healing, I always attribute this to a good diet.  I think if I ate convenience food then I don't think my skin would be as healthy and heal as quickly.  My scar is bigger than I thought which I'm not too bothered about, my body isn't perfect but I think these scars are parts of me and are an account of what I've been through.