I haven't really done anything this weekend. You see, now that I am going to the School Center, I have to spend most of the weekend relaxing for the upcoming week, otherwise I may end up in yet another flare which I really don't want! It's strange how even just going to a School Center and staying in one place for 4 hours every Monday, Wednesday and Friday can make me so fatigued but trust me, it does!!! I am SO glad that so far the school center is going well and that I have made some new friends who are really nice and supportive ... unlike my so-called friends at my old school!! Apart from the fatigue and pain, I am happy at this center has the teachers understand and don't rush me into doing anything, I am allowed to take a break as and when I need to etc.
The School had a meeting on Friday to officialy "hand me over" to the School Center. We haven't heard anything about how it went but I did get an email from my Psychologist at the School asking how the week at the Center went and if I was worried about anything. I think she thinks that my mum forced me into going to the center even though she didn't!!
I have been talking to my friend, Brogan from the School Center on MSN today. She was really upset has her 19 year old sister has just had a miscarraige. She was about 12 weeks pregnant and was so looking forward to having the baby. Brogan says that she wont even talk to anyone now because she is so angry and upset about what has happened. I comforted Brogan for about half an hour until I had to go but I told her that if she ever wants to talk to someone, that she can always email me. She has been so good to be in the past week that I have known her so it's the least I can do. She said that she will be at the School Center tomorrow but that she may not be her normal, happy-go-lucky self, which is only to be expected. I understand a lot of how she is feeling has I lost my grandma when I was 6 and now that I have RSD, I just feel like I am on an emotional rollercoaster all of the time!
We had the builders in yesterday, they are only supposed to come and work in the week but they had to move our boiler ready for tomorrow. We are having an extension built and a new kitchen fitted has I am quite unsteady on my feet and fall really easily. Hopefully that should make things a little easier for me and my mum.
My mum isn't feeling too well. She hasn't been feeling right for a few weeks now but she now has this weird tingling sensation in the fingers on her left hand. She has promised me that she will call the Doctor tomorrow if it's no better and get it checked out. It's kinda scary has my nanan had Progressive MS and her symptoms started similar to the symptoms my mum is experiencing, although hers was her eyes that started being affected. I've noticed that my mum hasn't been sleeping well either, she gets up at about 5am so I don't think that is helping. She says she feels like I do that no matter how much sleep she gets, she still doesn't wake up feeling refreshed and always feels quite drowsey. I shall keep nagging her until she goes to the Doctors, I think she is scared but like I told her, it's better to be safe rather than sorry and hopefully it will turn out to be nothing serious and it can be easily treated. She's her own worst enemy has before I was diagnosed with RSD, she always wanted to take me to the hospital to find out what was wrong but now SHE is ill, she doesn't want to go!!
My leg has been spasming a lot more than usual today also. The spasms almost threw me off my computer chair this afternoon because they were so bad! It was quite a scary experience to say the least. The weather is horrible so I don't think that has been helping, one minute it is hot and the next it is really cold and raining!!
I'm going to go and try and get some sleep has I haven't been sleeping right well, wish me luck!!...
Tailing Trout at Little Pine Lagoon this morning.
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Only a light northerly blowing as I fished Tailers Shore.
Trout were tailing but illusive. Two other anglers landed fish, one a good
21/2lb. The rest of us...
12 years ago
2 comments:
I hope you've been able to get some rest... not just sleep, but rest. :) Your mum, too; it must be so hard to worry about her as well as dealing with everything you must deal with for yourself.
I know all too well how terrible it is to be without sleep night after night because of the intense pain of RSD (mine went undiagnosed for 2 years after my injury!). Even worse, I was not given any sort of pain medication or anything until about 1.5 years after injury; when I began to take the first recommended medication, I was beyond happy to sleep through the night for the first time in so long! Unfortunately, it's still not totally restful sleep, but it is much improved than previously.
As a mum myself, I know it is VERY much what we are used to doing - to take care of everyone else. When it comes to taking care of yourself, well, if often takes the back seat. When it comes to something like what you're describing, it's only natural that she would feel frightened, wondering it's this serious thing. Perhaps you now have the perspective to tell your mum that, even if it's something not good that's bothering her, that she can handle it (as we all must) just like you're learning to handle your RSD. NO ONE wants to have to, but I think that sometimes we just must learn to work with what we have. I'll be keeping my fingers crossed that your mum's tingling is just something very minor...
I'm so, so glad for you that your school centre sounds so positive and supportive. I feel for your school friend's sister as it is a painful thing to go through. With time and support, I hope she will be able to move on from this difficult time.
Thank you Lisa for your kind words. Mum has an appointment with our GP on the 26th November so hopefully he will be able to give her some answers has it is really freaking us both out though. I've told her that she shouldn't worry too much though until we know for sure what is wrong, and hopefully it will be something really minor that can be treated.
I haven't had much rest, I have too much going through my mind at the moment. I certainly understand the not having pain meds situation, i'm not on any pain meds at the moment other than Ketamine which I only use when I am in a really bad flare. Non of the meds worked for me other than the Ketamine and made me worse so on the advice of my doctor, I stopped taking them. I had to come off of them anyhow when I went onto the intense Physio program. I don't know how I manage sometimes, it's so frustrating when I need something to take some of the pain away but to realise nothing works.
It only took me 4 months to be diagnosed with RSD has my mum took me to a different hospital where thankfully, the Orthopaedic consultant recognised my signs and symptoms, even though he had never seen a case of RSD. I really feel for all of those like you that go several years without a diagnosis.
Take care
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