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The last few weeks i have been gradually starting to think about Christmas and how to manage it, and as i have continued to feel not so good lately I was feeling a bit daunted by the whole thing. So I thought about ways around it and came up with this. I have sent it to everyone who may consider giving me something.
I am just posting this here as other people with ME may feel the same way about Christmas and seeing that i am doing this may help you think that there are alternatives that might not hurt everyone’s feelings… I have had two responses so far and both were entirely positive, so i still have one family member and one friend talking to me!! phew!
To all my lovely friends and family,
As most of you are aware, shopping in shops is not something I can do, and last year I did all my Christmas shopping online. I did, however, find it was still a lot handle as I have to limit computer-time and I also find organisation and making decisions about what to get for people quite exhausting when my brain is not working so well. The hardest part though was receiving the deliveries, as I cannot stay out of bed all day nor can I jump up from bed and launch myself down the stairs without risking falling over or at least making myself feel very dizzy and faint. The memory of last year has made me question what to do this year as I have been going through a bad patch and just cannot face it. ***** says that no-one will mind if I just don’t get them anything, but I was not comfortable with this, mostly because when other people start giving me things I will feel so guilty, and it would feel like I have mislead you all: SO, my plan is to a) let you know early so that you have no expectations and hopefully will not have got me anything yet and b) to propose an alternative:
I would like to propose that instead of giving gifts we just exchange cards.
If anyone really wants to give me something (please do not feel obligated), I would really like a donation to MERUK (it can be done via my justgiving page (see link below), it is very safe and straightforward to use). This is a potentially very exciting time in the ME-world. A strong link to a retrovirus has been found in the US and the UK charities are keen to fund studies to replicate and expand this research to find out what this could mean in terms of the development of a diagnostic test, a vaccine and even possible treatments in the (hopefully not too distant) future. It would give me enormous hope to feel part of making that happen and would make me just as happy as getting an actual present, if not more so. More info for those who want it is in the links below.
If you have a favourite charity, please let me know and I will happily make a donation instead of the present I would have bought for you. If you do not make any alternative suggestion then after Christmas I will make a donation to the ME charity using what I would have spent, so if you have another preference, don’t be shy!
I hope this is ok with everyone, thanks for your understanding,
Ashy xx
My Justgiving page for ME Research UK is: http://www.justgiving.com/jfqashy/ To donate you just sign up for a justgiving account if you don’t have one already, then click to donate. It is easy and you can really boost your donation if you are a UK taxpayer by choosing gift aid.
The Whittemore Peterson Institute in Nevada that made the HMRV discovery: http://www.wpinstitute.org/ (there are links to articles in the media about the discovery and also some good FAQs about ME in general and also about the retrovirus HMRV and what it could mean.
ME Research UK: www.meresearch.org.uk (And their reaction to HMRV from their homepage: http://www.meresearch.org.uk/information/publications/xmrvfind.html)
I took this picture over a week ago (23rd August). I was spending time in the sunny back yard, trying to de-stress and relax. It worked a little bit. I squeezed and sniffed all my herbs (the lavendar given to me by Mr& RachelCreative, my rosemary, mints, two lemon geraniums (one is like sweet lemon sherberts, the other sharper, like lemongrass) and other geranium which has quite a strong geranium smell (even if they are all pelargoniums, strictly speaking!), and nibbled some parsely, so it was an aromatherapy session of sorts… all the DLA stuff was going through my mind, around and around…
My letter requesting the appeal has been sent today, so hopefully i will get a breather before having to think about it again. My health has been really bad the last couple of weeks, which may be partly down to the stress of it all, as well as all the time spent concentrating and preparing documents, reading guides on how to appeal etc. I am also not sure if i am fighting off a virus… my stomach has been really upset, my body clock has been misbehaving and i have been sleeping badly but having to be in bed a lot as feeling so rubbish, my heart has been beating sometimes fast and sometimes having little spasms (not painful, just odd), walking has become so hard i am struggling to leave the house and walk a few yards during the “high” (ha ha) point of the day… whatever the reason i have been feeling pretty awful and struggling to stay positive… things could be worse of course, and it is not all doom and gloom, i just hope to start perking up soon.
Well, bad news is that the benefits service who could have helped me have refused to take my case on for appeal… so if i want to carry on to appeal i have to go it alone… I am not sure what they would have done for me, but they would have come with me and helped me prepare for it, and possibly “represented” me in some way. Anyway going alone (with my partner) is a bit daunting. The reason they are not taking me on is that I do not have good medical support/evidence, and as my case stands it does not look very strong, as without medical backup they (DWP) have every reason not to believe me it seems. The service have limited resources so can’t take on someone in this situation. I have an appointment with my specialist in october so i am hoping that he will be very supportive so that i have a basis on which to continue to appeal (and to challenge what has already been said about me), but i am having real second thoughts about continuing. It is stressing me out! I know that if i don’t i will always be thinking, “what if i had carried on…” but i am left doubting how strong a case i have and my chances of success after this latest development, and it is a lot to put myself through for nothing. I suppose i will just carry on until i have seen the specialist and give up if he is not overly enthusiastic/supportive/articulate but i am so sick of all this now. I could rant on and on about it but i really can’t be bothered to waste my breath today!
