After going to my sister’s wedding and then having the “virus from hell” just over three weeks ago, i have been really struggling… (not that i wasn’t before you understand!) BUT i finally feel a bit better the last few days – back to a level that i can live with longer term – anything less than this is just not do-able. It may only last a few days but it is nice to feel that each day is a bit easier, not that i am actually doing much, but being is easier. It makes me realise how hard things have been when this feels so good! Just a few days ago i was feeling very different, and everything felt like a real struggle but i am enjoying the upturn while i can. So, despite continuing muscular pain and headaches, i am feeling quite positive.
Due to being otherwise engaged i was a bit late starting on my Just Four Quidactivities, but last week i managed to get my JustGiving pages set up and then email everyone i know to tell them about it. I optimistically set my target for the year as £250 for each of the two charities (as you have to set a target) but i did not think that i would make it in a month of Sundays…
Amazingly i have already exceeded my target for the Ramsay Research Fund and my ME Research UK page is starting to look at bit better after my Dad thought it needed cheering up and made a second donation! So far I have raised £450 in total and I am so chuffed and so grateful to everyone and their generosity. I really thought that a few people would give a tenner (which would have been great), but i have had some HUGE amounts given. I really means a lot and has cheered me up hugely to think that something so great can happen from a relatively small action on my part – all i did was ask! True, i cannot run a marathon so should not be expected to “do” anything like that and also i would not be comfortable asking again and again for money; but i am so surprised and encouraged that my small actions have created some money and potential positive change for the future for people with ME.
I would encourage anyone who has some family/social contacts but who doesn’t think that there is any point, to give it a go, you may be surprised who donates, as i have been. If they don’t, well it doesn’t matter – you gave it a go! I think it maybe makes some people feel good that they can do something useful/practical to demonstrate support for me and my situation when there is nothing much left to say, although maybe i am reading too much into it.
If it is energy issues preventing you, then feel free to base your justgiving pages on mine (see the links to them on the left of my blog) and i will send you a copy of the email i sent round to people too if that helps (just ask). Thinking what to say can be the most time and energy consuming part.
So anyway, it is nice to have good news!
More good news is that i have booked a few nights in Scarborough again to the same place i have been before. Last week i was thinking there was no point as i wouldn’t be able to leave the hotel, the travel would be a trauma etc etc but this week i feel that it is do-able and that i won’t have a good time if i don’t give it a chance. SO let’s hope this better feeling last until i go in a month’s time!
Last time i went i only left the hotel once for a cuppa on the harbour front, but i was only just starting to take Midodrine then and my POTS symptoms were a lot worse. Although i still feel bad when i stand for any length of time, i am not living in fear of imminent collapse as much these days and can stand and walk for longer (as long as i am generally feeling ok – some days or times of day there is just no point trying is there?). Also that was December and this will be July so i hope to be able to sit in the park, on the sea front etc and be outside a bit more in a gentle and relaxed manner without freezing myself half to death! So i am looking forward to a summer holiday. It may not seem exotic to others but it is as far as i can possibly venture these days, and it is MINE!
Other news is that i have ordered the urine test “for ME” (see previous post) and am stopping taking Kefir from now until it arrives as probiotics can apparently affect the results… so we shall see if i have ME ha ha ha.