Sorry it has been a while since I last updated you. I have been re-evaluating everything again. Yes, I know I seem to do that on a regular basis but things change, the way I think about things change and I am never one to remain still in for long if there are improvements I can make.
Firstly, I stopped all medication for headaches..no Amitriptyline; God that was a bloody awful experience taking that for a few days. Couldn’t wake up, felt absolutely pants. No paracetamol either.
Secondly, it seems all my pain can be attributed to my Fibromyalgia. So any small twinge is a mega paintactic trauma for me. When I was first diagnosed with Fibro, the consultant wouldn’t tell me what I had but said he would write…so I followed him into his office and said I wanted to know, but this arrogant man told me to go away and wait for a letter! (The nurse told me it was 4pm on a Friday and he goes early to play golf!)| What an absolute tosser and yes I did complain about him, not that it did any good but I realise that nobody has ever talked to me about what having Fibro means, not even a measly leaflet. So it leaves me feeling like a hypochondriac complaining about pains everywhere that I am confused about. Now I know that if I have pain somewhere it is more likely to be Fibro than anything serious, if it is serious then I am more likely to ignore it because I am always in pain! Not a problem because it is not something I dwell on and do my utmost to ignore anyway.
I have been lucky enough to attend a a therapy gym – West Berkshire Therapy Centre to be precise which is marvellous. I can exercise twice a week on some brilliant electronic exercise machines and feel the benefit.
I have also been to my first West of Berkshire Empowerment Group Meeting – DEEP, which was very interesting and I hope to get more involved with as time goes on. They had a demonstration of sitting exercises by OOMPH which I believe they will be taking into (local) care homes. Personally it was not suited to me and even though I was sitting down I found it left me with a painful shoulder and knees! It is supposed to be fairly vigorous exercise to get the heart pumping and do some good and I am sure on more able (both mentally and physically) people it would be a benefit. I personally thought the instructions can be hard to follow depending on the type of dementia someone has.
I was also invited to attend the AGM of West Berkshire Neurological Alliance which I did as a representative of the YPWD [Younger People With Dementia] which is another group I have recently been introduced to. The YPWD is an excellent group which arranges gardening, a choir, and I am hoping to join art group sessions, which may (hopefully) include furniture restoring soon.
The best thing of all for me is being able to get involved in the education of living with dementia, so watch this space.
Still having up and down days but part of my re-evaluation is to focus on eduction and not on my own Alzheimer’s which is still very very early. For the moment I am going to ignore my diagnosis and only refer to it if it helps our cause. Not sure if that’s the way to go but for now it is for me.
Handbagwarrior; verbal ramblings 
You can do it! I’m rooting for you 🙂
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Thank you 🙂
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It all sounds very positive with these groups and getting involved Gill.
As a fellow FM sufferer I know what you mean about the frustrations of thinking the pain could be something else, but in my case, It may well BE something else. 😀 I told my Cardiologist last Monday that I wasn’t getting any heart symptoms (when I should have said, I don’t KNOW if I’m getting any Cardiomyopathy symptoms because I keep attributing everything to FM).
If anything good is to come out of early onset Alzheimers is that you are in a prime position to help others (experiencing symptoms) and you’re still able to attend support groups etc.
I went off Amitriptyline last year and after 3 weeks I was down to only getting a couple of hours sleep and starting to get confused and bump into furniture (from lack of deep, restful sleep) so had to restart it again.
I did notice that it was definitely the Amitriptyline that was causing my dry throat all the time (while on it though).
I don’t like taking drugs, but at least I’m better on them.
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As per usual Vicki you are spot on. I realised I was trying to answer their question about where the pain was instead of saying “I’m sorry but I can’t really tell you because its everywhere, and I am not sure”. I realise now that my Fibro distorts my perception of where pain is or how it is, but Doctors do press you for an answer you can’t give.
I still take my medication that I need to but none extra now, if I don’t sleep and I am in pain then I will live with it. 🙂
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Well done you ! Keep up the great work xx 😊😊
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Thanks Chris, am happy to have found somewhere that I can finally get involved with. x 🙂
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I hope that the gym helps you – finding the right type of exercise can be tricky. Fibro can be tricky. A number of people use supplements like D-ribose, etc., but I’m not sure there is one answer for everyone. Quality sleep is important, and that’s where the exercise, whatever kind is tolerable, helps. My mom suffered from Fibro most of her life, I suspect that she had a collagen disorder.
We found positive changes when we stopped most of Mom’s meds, but there are definitely some that are worth taking, even if they are a very minimal dose. Best of luck trying to find what works best for you, and also with the gym!
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Thank you Mona Lou, this gym has wonderful exercise machines that don’t damage but allow people with a disability to exercise at their own level. My sleep is affected on both counts – fibro and Alzheimer’s but I make sure that I do as much exercise as I can which definitely helps. Did a lot of walking (for me) yesterday and was in bed at 9.30pm absolutely shattered (and in a great deal of pain) but slept reasonably better. Gym today so looking forward to it 🙂
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Sounds like your re-evaluation has had some positive results.
On the topic of doctors asking for an exact location of pain what I find impossible to answer is the ‘what kind of pain is it?’ question. ‘Sharp or dull or achey’.
Good luck.
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Yes it has. I always think ‘a hurty pain’ ! 🙂
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You are such an inspiration to me Gill. I love your attitude and your closing statement. You are absolutely right. Again, I wish I was over there with you. It’s hard here to have no one I know or close by, for support and just mutual friendship, with someone going through what this disease puts us through. Much love my friend and keep fighting. You got this!! 💕
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I always think you are an inspiration too 🙂 I think because I don’t look like I have Alzheimer’s no-one treats me as if I need support. The Younger Persons With Dementia Group is the place where I believe I will get that support until then, my friend I can think of you x
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Oh my. That’s exactly what I’m going through. I don’t look sick and my young age – no one supports, believes or many times, bullied and/or ignored. More education all around the globe is needed. 💕
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Hello Gill,
Wanted to let you know that this article will be included in the dementia “Symptom Perspectives” monthly links tonight, October 30, 2015
https://paper.li/f-1408973778
I would like to thank you for sharing your lived experience. My hope is that these words and projects can become valuable resources for change in relationships, treatment, and policies.
Much thanks,
Tru
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