RSixD

1st July

I am in town today, I don't really feel that good, very tired and still in pain from my ribs, but am fed up of being in all the time and not being able to do much. I am a outdoor person and feel like a caged animal when not able to get out. I am sat on the bus, on looking forward I notice the bus is very close to the car in front, then crash, smashing the back window and throwing most people including me forward, lucky for me I had my arm round my ribs I travel like this as it helps with the bumps at the moment, even so the pain was bad. The driver of the bus asked if everyone was all right. Everyone involved was ok luckily. I told him about my ribs, he said are you sure you have done no more damage. I told him I was all right, the pain would go hopefully very soon. I went on to do my shopping but was not in town long. I seamed to be very unlucky with getting things to make my ribs worse. Later on that night I ached and felt very sore.

2nd

No physio today Wietse is ill. My friend Russ came round and I went with him to a sort of coffee morning come question time about any help from the National Health Service (NHS) and general help. I met a lot of nice people there. I did not really learn a lot though but it was different.

4th

Today Paul and I went to a local car boot sale it was a sunny warm, if not windy, day. The walking caused me a lot of pain. My ribs are very tight at the back. I have taken a lot of extra tablets. Most people it would make sleep but for me the opposite seems to be the case.

7th

Docs today. He has reduced GABAPENTIN by 100mgs in the morning. I wanted to reduce more but he said not too much at a time. I suppose he is right as I still need strong pain relief for my ribs as well. Like Wietse says, little steps. It seems just lately that all it has bean little steps. Next time he will review the tablets.

8th

Today my grandson Jay-Jay is representing his school in a sports day at a near by junior school. I am going with my daughter to watch. They did various games like bean bag throwing and running races the day was very hot. They all did very well. Jay-Jays team came second out of four teams so, they were proud of there effort. On the way home I got him and his brother Tommy-Lee a ice cream which they enjoyed very much. Later on that afternoon I had my VITAMIN B12 injection, this one was not too painful and did not hurt too long, about two hours.

12th


Today is my daughters birthday I am at the dentist for a check up so we (Paul, Andrew and me) are going later to see her. She was pleased with her presents and homemade cake, most of it was money which is always useful. Jay-Jay and Tommy-Lee were very excited as usual.

13th

RSD Anniversary

Today six years ago is the day I fell and got this dreaded disease I say dreaded its not really because no one really knows about it. What I did not know how my life would now change for the worst. Six years on and what have I learnt.

My whole life did change what I could do be for now most I can not or, in a different, not as good way, running was finished but now I've managed to slowly start again, so was my independence my life felt like it was no good. I can not where the same shoes, or in the earlier days socks as I used to.

PAIN PAIN and more PAIN and lots of it many different types non relenting.
The mountains of tablets I needed to take.
The side affects of the tablets which I get more tablets for.
I am on less that I used to be but I will not be happy till most have gone.
Sensitivity is very bad at times, the slightest touch can set things of in a very bad way even putting me in hospital. The severe muscles spasm's that can be full body, happen more than I would like them too.Virus and illness that takes longer to get rid of.
All the extra things I have got through RSD like Fibromyalgia, Osteoporosis, Insomnia, Chronic Fatigue to name some.

I need to be strong. Most doctors have never treated or heard of it. I was lucky being diagnosed if you can call it that very soon (about four months). I was unlucky to get Pain clinic as all they seamed to want you to do is take more tablets. It was not all bad they tried various treatments most very painful. I no longer go but when I was in hospital recently they wanted me to start going again.

I have learnt people think because you look well you feel well, most of the time that is not true I look better at the moment as I have a good sun tan. A lot of people can not cope with my pain and me not being able to not do the same things as before, and no longer come round
I have lost a lot of friends with not going to the running club, some keep in touch.

I have learnt I am very much on my own. I don't think they will be be a cure anytime soon, there is not enough research done. RSD is different for many people some get all or most of the symptoms, others hardly any. I have learnt that pain else where in the body usually starts the RSD up in my foot.

Ice is a no-no on me as is getting sun burnt. I have also learnt that my pain can be controlled when not extreme by listening to music. I can hide the pain from most people if I want to. I get my hopes up at a new treatment only for it to fail. If I find any new information I look into with great expectation.

RSD can spread. My RSD has spread most of my right side is affected in some way.RSD must be the most strangest thing to get as how can cold be hot and vice versa but it can be. Half my body or half a leg can be cold the other half red hot. Very cold weather makes it worse but also very hot does. The temperature changes are unreal going from sweating hot to shaking cold in a blink of a eye.

The only person to help me the most is ME. I have properly got the best physio ever He is much more to me than that, he helps me a lot by just talking and seeing things in a better light when they look hope less. I have learnt not to give up even though I have in the past. RSD and 'the change' do not get on. What tablets and treatment work for me might not help some one else with the same symptoms

I can not play with my grandchildren as I wanted to I had visions of me taking them to the park or in town but most days I am unable to on my own. This gets me a lot as I was very active always running or walking everywhere, people would say when are you going to slow down. Things I took for granted every day tasks can be so hard. What got me is that if it happened to some one less active they would hardly notice.

I try to pass on anything I think will help any one.
I hope I have helped a lot of people with my blog as it can be very hard to write.

Till next time.
Love Gill.