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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)
Well, yes. I had a great week with my friend who came to stay. My partner was at home most days too and although we all felt a bit dodgy at various times for various reasons we managed to go out and about a little bit, but mostly just spent quality time together. I was beaten two games out of three at scrabble, we ate lots of Wensleydale (it’s a regional UK cheese for those not in the UK), sat in the sunshine (it was a cloudy week overall but we seized any chance we got!) and had lots of hugs. The biggest thing we did was a picnic in a park where there were us three, plus four other people!! A veritable party in the park!
The downside is that as soon as she left i got a sore throat and a runny nose… this is the third cold i have had this spring/summer and i am not enjoying them! Last year i only had one cold (in winter, which seems only right) and it had been a while since i had had one even then. I used to say that i didn’t get them; that my immune system seemed to fight them off. I used to feel worse than usual for a week or so, but not get proper symptoms, just a hint but it would never fully develop. Of course i used to moan about this and say it would be better if it just came out like normal, as then at least i could say i had a cold and have a reason for feeling so bad – i am now eating my words as having a proper one is definitely worse. It is amazing how annoying inflamed nasal passages can be: My nose has turned reptilian and scaly; my eyes have been streaming from the itchiness leading them to be puffy and small (piggy); and sleeping has been very difficult.
Having said that, i think i have turned a corner today. It is only day four and i do feel a bit better. I slept ok, I have not used quite so many tissues AND i have mostly been able to breathe. Some of that though is thanks to my Sinucleanse thingy, which i ordered online yesterday lunchtime and which came today (!). It is a plastic bottle and it comes with salty stuff that you dissolve in warm water, then insert the nozzle up one nostril and squeeze water into it – guess what? It comes out the other nostril!!! Quite funny actually. After some washing you blow your nose (quite a lot of snot came out the first time!) then repeat on the other side. I bought it because a friend recommended a “Neti Pot” last time i got a cold, which is like a gravy boat for the nose, but the same principal! It is supposed to wash out allergens, viruses etc and reduce the number of viruses you get and the duration they last for - i am all for that, so am giving it a go. I am already feeling the benefit.
(By the way, i also recommend Boots catarrh pastilles for blocked nose, and chestiness too… they are small and innocent looking, but really are the business! Suck ‘em and see!)
Maybe my immune system behaving differently is a sign of change? This theory has been mooted… no sign of imminent ME remission but i will let you know!! Funny though, that apart from the worst day yesterday where i was seriously suffering with symptoms and lack of sleep, i do feel a bit different when i have these viruses. Maybe it is because i expect to feel like someone with ME and a virus on top, so have low expectations, or maybe because i do less due to having a virus but my energy levels do not seem to be significantly lower, in fact, i would say they have been about the same but more consistent through the day; less major slumps and sleepiness and maybe more stamina at a steady level… could be adrenaline-type reaction caused by “having to get through this cold”, or the irritation of symptoms, or maybe i am just imagining it… or maybe there is an immune component to my symptoms even after all these years?
Anyway, i am feeling like this cold will be over in a couple of days and i am just grateful that i have not (yet!) had the frequent nosebleeds of last time which literally drained me of all life-force! By the way, i recommend you read this about how to stop nosebleeds if you are likely to get in that situation – i found it after my worst one and think it may not have lasted so long and been so traumatic had i known about this before! It is hard to search online when blood is pouring out of you, so click now!
Well, my week is over, my mum has been and gone and it has been a good week overall.
Having my Mum here really helped me to be able to do the odd thing as i realised on the first couple of days before she arrived, doing everything for myself and the odd household task (washings etc) can really sap my energy and i can overdo myself before i know it, especially if i have not slept well enough. Just having someone there to wash up and do some jobs for me made a big difference. Also although having someone here is tiring as i am talking etc and maybe going out more, it also helps me to relax and enjoy the day and helps time pass, which has the opposite effect. We did not do anything major, but we did go to a local lake and sat there for a while and i took some photos, we had our massages, we went to a garden centre and also visited a friend for a cuppa. So all in all a good few days.
Yesterday i was on my own and got all my jobs done, so today i rested all day and then went out into town briefly to a shop (where i pointedly asked if there was a chair without something on it that i could SIT on! The lady was very obliging and moved some wares elsewhere) and to a cafe to meet some people. I stayed for over an hour before i felt very light-headed and came home. I really enjoyed it though and it was good to have got out despite being home alone. I am just winding down now and hope i sleep tonight so that i can recover quickly. My partner will be home tomorrow evening 
I have missed her!
Next week we have another visitor, a good friend is coming to stay, so in effect i have another staycation next week! Not bad eh? No firm plans but hope to go for a picnic somewhere if the sun shines – at least i will be able to eat it if we take our own food! Also planned is a game of scrabble – we can take all week to play it after all – can’t wait! I only wish my dictionary was a bit lighter as it makes my arms ache!
Well, Happy New Year to everyone reading my blog!
It is about time i posted an update about how things have been going… thing is, i have been so busy! Yes, it is time to be definite about the new the new tablets for POTS… they are doing some good, for sure!
Symptoms improved include:
Firstly and importantly, i have not had to lie down in a public place, near collapse, due to a POTS “episode” (where my heart is beating very very fast, i am melting with heat radiating from me, feeling very dizzy, weak and ill wondering how i will get home), which is very welcome! I suppose this means my heart is not beating as fast anymore… although it still seems to race sometimes… we will see what the machines say at the hospital when they test me on Friday!
Headaches and muscular tension in upper back, neck, shoulders and head – still there but less pain and headaches less frequent.
Blurred Vision – seems a lot better – amazing what a bit of blood to the eyes can do 
Temperature control (less hot flushes and icy feet – although my new sheepskin slippers may also be having an effect there!)
Walking speed (short distances obviously!) and ability/speed to get up from sitting both often better.
Recovery period – i have been recovering more quickly than i would expect from such “big” things.
I am feeling better in myself, especially in the mornings and can usually wait til later for my nap if i need to.
I often have more stamina for talking to people, going out, being online or reading etc.
Things i am not sure if improved yet:
Distance i can walk and time i can stand up for: I have done a bit more of these to test them out but do soon reach my limits… have had a couple of good experiences where i felt it was a lot better but in general it is not a lot better so the jury is out on that… i am not getting to the point of collapse as quickly (see “episodes” above).
Things i have been doing over Christmas and New Year…
Travelled for seven hours door to door to stay with my Mum: this was a trauma and i NEVER want to see a train again, the wheelchair assistance helped (once it arrived) and if i had not missed my connection the journey would have been a bit easier… however, although i rested up, i did not feel as bad in the following days as i expected so i was very happy about that.
I stayed at my Mum’s house for a week and spent time with my sister, her boyfriend, my uncle, grandparents, dad and other people that came around and in general felt ok to chat and join in. It was nice to be so sociable!
I went out for lunch with my uncle, mum and sister.
I went into Marks and Spencer Simply Food (my sister drove me to the door and then took me home!) and i enjoyed browsing all the lovely things in there – i had no idea all the nice things they have!
A friend of mine drove me back home in her VW camper van, then stayed for a couple of nights to see in the New Year with us. The journey was lovely, sunny and frosty and so much more relaxed than the train. The seat in the camper van was really comfy and had arm rests and tilted back so that i could doze as well!
On New Year’s Eve we drove to the coast to a lighthouse and i walked a little way and looked in some rock pools, but saw not one crab! Once i went there years ago and there were hundreds so i was a little disappointed… the seaweed etc was beautiful though. We then went to a pub for lunch on the way home! We were out for 3 hours! I then had a sleep and stayed up til 1am to see in 2009 with card games and shortbread biscuits… needless to say i slept nearly all of new year’s day, but happily enough as there was a good reason for it.
Since then i have walked the dog once, a short distance but it was not too hard. I have been out for a couple of hours in the evening to a social meeting of creative people, AND been back to an M&S food shop
Today my main task is to write this, have a bath and not much else as i don’t want to over do it too much and my headaches have been returning a little… all in all though it was been a really encouraging start to the year and although i still have just about all the POTS symptoms i had before they are less distressing and not as bad as they were. I am hoping when i go back to the hospital on Friday we can build on this good start and that this will not be it, as although it is a huge improvement from where i was before, and i am very grateful, i would like a bit more, please! (call me Oliver!)
I do not expect miracles, but have been operating at such a low level over the last couple of years that it would take several hundred percent’s increase to get back to where i could do certain things with any reliabilty, such as drive places and be able to stay there a while/walk a little then be sure to feel safe driving home, go out in evenings/socialise more often, be able to travel long distances to visit my best friends, be able to go somewhere regularly and reliably like an evening class, be able to wander around a little more to allow me to go into shop or visit museums or events more and to allow me to take photos again which usually involves a bit of wandering/standing to get the best shot – this last one has been very hard this year and i miss it but it would not take much improvement to be sometimes possible again. I would also like to be able to take the dog out again at midday and not have to employ a dog walker to do it!
The other thing that may be coming back is the ability to do “boom and bust”… i know, i know, this is the thing that we are told never to do as people with ME! BUT the POTS symptoms have meant that i have not been able to take advantage of good days (i have not had much variation in my days – maybe operating more in terms of a good half hour!) to do something big, and to then suffer later. While this is not an ideal way to live, it does give us the option to do something we really want to, or to experience something important to us, even if we have to suffer the consequences, sometimes it is worth it!
So it is all good, and i have hope that this year will be a big improvement on the last. Even if this is a good as it will get, that will be a huge improvement. It is so nice to see the downward spiral of levels of health turn a corner and start to rise again, for the first time in maybe seven or eight years! You can see why i am excited!
The only depressing thing is that while I am getting a diagnosis and treatment, so many people are suffering with these symptoms and not getting any such joy. It is only because i volunteered to take part in a research study that i was diagnosed and got to see the specialist, and only because i live in the city i do that i had access to that option. I knew something was not right, that it was more than my usual ME symptoms and that it was seriously affecting my ability to carry out normal day to day activities in a very specific way. My doctor said “I just think your ME is very bad at the moment…” and would not refer me to anyone, so i took matters into my own hands. I was still shocked when my suspicions of POTS were confirmed but so relieved as well to have it acknowledged. I know of two other people with severe ME who almost definitely have POTS (i am no doctor!) but who have no hope of getting properly tested or treated. It is just another set of symptoms that they are needlessly having to cope with on top of everything else.
The drug i am taking, Midodrine, is not even licenced in the UK, so i think i am just getting it as i am part of the research being done at the hospital. It seems early days in POTS treatment in the UK, i hope things improve soon for everyone else as i have a feeling that there are lots of us out there needing help with this…
