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I have had a pretty good summer! As I said in my last post, I had a great visit from a friend. I then had another friend come for a week and although I felt quite awful at times and had lots of sensitivity to noise, light and sensory overload as well as other things, she is the kind of friend who made the experience more pleasant. She just kept me company and we still had fun. It is hard to be around people when symptoms are severe so I was so grateful to have someone so chilled out and who knows me so well to be here with me. After that I had a few days to gather my self, my strength and my essential belongings before heading up to Scotland for a week. I was really surprised that although the travel was hard (and I slept literally the whole day after we got there) I managed to go out briefly three times during our stay and really enjoyed the things we did and saw. After that we again had a few days break before my partner went away with work, and my mum came up to help me cope with my daily needs and keep me company. We had a good time, and it felt quite busy despite only going out to a doctor’s appointment one day and a quick trip to see the sea and sit in a cafe another day. That was last week and this week we have the builders in – they may still be here next week actually. So it has been really busy!
I was a bit daunted by this summer before it happened. I worried about how I would feel, whether I would be able to enjoy things or if I would feel too bad to make the most of things that were happening and feel I was missing out. I have been pleasantly surprised by what I have done and how I have recovered quite quickly from each thing. I have been very careful, of course, but think my post-exertional malaise is not as severe as it used to be, particularly looking back to last year. I do get a flare up of symptoms, more pain and neurological symptoms rather than fatigue, per se. The sleeping all day the day after travelling was really unusual for these days, though so was such a long journey. It took three hours.
So here I am back at home and contemplating what I want to focus on over the next few months. Some things have come out of the GP appointment which will take some time and focus. I will talk about them in another post. It has been interesting to be without a computer, or accessing it less over the last couple of months. I really want to keep my blog going and interact with my online friends, but I also want to be online less and do more creative things. I did not really miss the extra internet hours and think I need to set some boundaries for myself so that I am only online at certain times of day and for short periods. I doubt I will miss out on much and it will focus my attention to the important stuff.
I really want to actually DO more creative stuff rather than just think about it and I need to make some space. The health stuff is going to take some time each day, so I need to make a plan! I would love to go with the flow more, as I expect I have expressed in previous posts, but with such limited functional time each day it is really hard to do that. I also find it really hard to remember what I need to do, so unless I have a plan I use my energy on non-essentials and forget the important stuff. Not good and does not give any sense of achievement. I have a new creative project with a friend so I need to make time and space for that. I am quite excited about it!
I subscribe to Sustainably Creative, by Michael Nobbs who is an artist living with ME. He is trying to earn a living through creative means in a way that fits around his energy issues. He has helped me to think about how I can fit in more creativity and work out what is important for me to focus on. He sends out regular digital postcards, an illustrated newsletter and daily podcasts which I really enjoy. This month new members get a free copy of his latest book! (He has produced others too). Whilst I do very little and could not contemplate trying to earn money from creativity right now, it is really good for me to do little bits and bobs and feel some sense of identity as an artist, not just as an ill person. While the latter wins out most days, the creativity and ideas are always there bubbling beneath the surface, even if I am not doing anything about them. It is good to see how others are trying to navigate these issues.
So, while I am back to the old routines in many ways, I hope to shake up a few and make some small changes, hopefully for the better.
Well, hello again, this is a long overdue update but much will have been forgotten as so much time has passed…
I have been to see the POTS specialist again who changed the dosage of both drugs I am on, but the second one did not seem to agree with me so I have reverted to the original dosage for now and might try again when I am not so busy and can tell perhaps more easily if it is really the drug or just that I am not doing so well for other reasons… I don’t want to dismiss it too readily as I know the options are limited and the lower dose has really helped. Maybe less is more, but my concern is that if this dose is the best for me with this drug, where do I go from here? Can a third drug be added to the mix (the more drugs, the more chance of interactions and negative effects) or do I have to forego the benefits of this one in order to see if something else suits me better? Tricky.
The weekend before last a friend came to visit, and I had a really lovely and relaxed weekend with her. I felt more able to chat and interact than I expected as had had a bad lead up, so it was good. We even did some creative stuff together! I have had over a week to recuperate and tomorrow another friend is coming for a week! Soon after that we are going away to Edinburgh for a week, so the rest of the month is very busy. All with fun things, so I hope I will be up to enjoying them.
I have been waking up really early recently, and sleeping less hours in total due to this. In general I am still functional as I was but am having a lot of symptoms/pain generally, which feels a bit strange. It may just be that I feel I am functional because I am not really trying to do anything big and my activity is limited to the mornings. By evening I feel pretty bad, despite my afternoon nap and I am going to bed earlier and earlier, though not getting to sleep any earlier in general. This early waking may just be the effect of summer or a new phase.
I do need to go to the GP and talk about my pain issues, but that won’t happen until September now. I had a bit of a scare when I forgot my Gabapentin one night, but did not realise I had missed the dose. My nerve pain was terrible and I barely slept. It seems to be in new places and felt worse than I remembered. There was no position to lie in without triggering it, whereas I used to be able to lie on my back with my legs up. I was so relieved when I discovered that I had forgotten to take my tablets and that I did not need to rush to the GP to find something new to help me. I am finding the drug less effective than it was and I wish there was something that would help with the nerve pain as well as the other types. I am not living in constantly bad pain, but certainly constant discomfort and there are periods of the day that are worse than others. It is good to know how much Gabapentin is working, even if it is not perfect.
I have not felt able to write blog posts, nor read many blogs by other people either, which I do miss. I like to keep up with how people are and what is going on but it just feels like there is not enough time/energy available for it all. My best hours in the morning can disappear very quickly doing essentials. I am going to have an internet break during this coming visit and also when away. I am spending a lot of time on facebook (as I can access it on my phone) which I get a lot from as it is my social life, and I don’t want to lose touch with everyone but I feel I need a bit of a break, especially from the more political stuff and news of Wessley that seems unavoidable recently. I would like to see what space a break will open up in my life, and seeing as I will be doing fun/sociable things in real life it seems a good time to try.
Speaking of Wessley, I wrote to The Times newspaper in response to an article they wrote about him and the death threats he has been getting. This is one of several media articles covering this story over the past week and I finally had enough and felt I had to do something in response. I won’t dignify them with a link, suffice to say they are very one-sided and another story about ME that does not address any of the really important issues, instead just focussing on the actions of a very small number of people with ME in order to undermine us and the validity of our voices. The reasons for these threats were not represented and the article itself admitted they were very few in number. I don’t know if my letter will be published, but I hope they do publish some decent responses as I know of other people who have written in.
Oh, I nearly forgot! I must mention the new International Consensus Criteria, published in the Journal of Internal Medicine. It gives a very clear definition of ME, as opposed to CFS. I really hope it will be adopted and used by doctors around the world and in research to move things along more swiftly.
I have just read The Sound of a Wild Snail Eating by Elisabeth Tova Bailey. I really enjoyed it and recommend it to people with ME who sometimes find reading difficult – it is short, simply written and in small chapters. It is really lovely and has nice illustrations too, even in the Kindle version.
I have had a few nice trips to the beach over the last few months. It has been really nice to get out a bit this summer. I saw some great waves!
I will stop here, though I am sure there is much more I could say. Will be back in the Autumn, no doubt. All the best til then to my friends.
I went on holiday a couple of weeks ago, and overall it was great! I was a little anxious about it beforehand as so many symptoms threatened to put a damper on it. Also I was feeling quite low in mood and really wanted it to be good – that kind of need is a dangerous thing.
My and my partner went on holiday, with our dog, but also a friend joined us half way through and stayed with us a week so we had some time with her on holiday and then at home as well, which extended the holiday vibe – so a good ten-day holiday for us.
We rented a cottage on the coast, actually very close to home, as travelling is something I struggle with and a long journey would have been something I would have to recover from once I arrived. Plus, if things were really bad, we also had the option of coming home again easily. It was lucky in the end that we did that as between booking and going I got my wheelchair. On the way home (because our friend had joined us mid-week) my partner had to make two trips as our little car was unable to take all our stuff, plus wheelchair, dog and three people.
The cottage was “bijou” – small and beautiful. It had a cabin-like feel with long painted boards on the ceiling and several times after being pushed in the wheelchair (which makes me feel pretty spaced out), or just when feeling a bit unsteady in general, I really felt like I was on the ocean wave without my sea-legs. There was a nautical theme with lighthouses, driftwood and shells aplenty and it was lovely and felt very “holiday”.
The beds were pretty comfortable. I was very worried about that before we went and had even rung them up to ask about them, after the very bad bed experience on our last holiday the winter before last. I did have a lot of nerve pain while i was away, both in bed and just randomly in the day which was quite draining and disruptive but I did sleep pretty well as I have started to take Eszopiclone and I think it really helped me to sleep in the different surroundings and with the nerve pain, which certainly allowed me to do a few nice things while away.
So what did we do?
We travelled up on the Saturday, but did not leave home until 3pm as the cottage was not available until 4pm. This worked quite well as I usually am not up to much until then and need a midday nap anyway. We got there and had a quiet evening but we did go along the road to find a view overlooking the sea before we settled down for the night. You have to see the sea, right? (It was not this late when we went that first day, but this is the same view).
The village streets were far from wheelchair friendly and I had to get out a few times when we went about (not to mention the time when I flew through the air and landed on my feet when the wheelchair came to a very abrupt stop in a big hole between some cobbles… I am a human cannonball… I was fine but my partner developed a huge bruise where her foot had hit the tilt bar at the back – ouch!).
On the Sunday it was really sunny and lovely so we went for a wheelchair walk, first along the river, which was the perfect width of path and really easy (except for the massive steps at the end), then down to the beach. This was not very easy as it was a steep hill and we didn’t properly think through the return journey (what with our sense of adventure and holiday excitement!).
The beach was lovely and warm. We (well not me, to be honest) dragged the wheelchair down the beach with us so that we could get to the water without leaving it miles away. I threw caution to the wind and decided to paddle. My nerve pain is worst at my ankles and is triggered by water and temperature change so it was a bit risky, but basically I just tip-toed so they didn’t get too wet. It was lovely and warm and frankly I would have just gone for a swim if I could have. Lots of people were and it was packed.
After a sit down, it was decided that my partner would take the wheelchair back up the beach and go along the car park and I would walk along the beach to the next path and meet her there. The car park was large gravel and like one big pot-hole so she could not push me along there, so I had to walk and so I might as well enjoy the beach. We hoped the other path would be less steep that the one we came down. The sand was very soft and although I enjoyed the walk it felt much much longer than it looked and it was hard going. I found some nice shells and all was sparkly and beautiful, but by the time I got back to my chair I felt quite awful, weak and POTS-like. I sat a while to get my breath back and let things calm down before I then had to walk more (huge gravel then steep hill!). I managed but it was way too much. On the way back to the cottage we sat in pub beer garden for a quick drink and it was sunny and quiet and I was comfortable sitting in wheelchair and felt ok. I really needed the “tonic” part of my tonic water! By the time we got back to the cottage though I had completely crashed. Just lay on sofa in zombie mode for some time. We were out for several hours but the time just flew by and we both had a really nice time being out exploring together so it was worth it.
After that I had a couple of quiet days resting and recovering (with a lot of nerve pain), and our friend arrived the Tuesday evening and we went out to the Indian restaurant around the corner, which was really good. I was really careful about what i chose and basically just ate rice with a little bit of the different dishes to taste – it paid off as I had no IBS flare-up afterwards! Amazing! The noise really got to me in there though, and after I finished eating all I could do was sit with eyes closed as I could not even follow the conversation with all the other noises there. We could not stay long. I felt better once we left and got some fresh air.
On the Wednesday I still did not feel too good but after an afternoon nap we went to a local second-hand bookshop. It was only ten minutes drive and was fully wheelchair accessible so I knew it would not be too hard. I was concerned that my brain-fog would prevent me from being able to focus enough to choose anything, but I found 4 books which all look really interesting:
The Diary of a Dying Man by William Soutar – (This is available on Amazon, I have not chosen that link, but it’s easy to find). I have read the first few pages and I think this will be a really interesting book. It is witty and also has already come up with some parallels with my life; early on he discusses various things people tell him will do him good (pills, potions, foods) and he says that he would be taking things constantly if he listened to all of this advice. I know that feeling!
Longshore Drift by Katrina Porteous and with Linocuts by James Dodds – this is the first book I really focussed on when I went in. It was on a little display and I cannot believe that no-one else had grabbed it before I got there. A little gleaming gem. The poem is very interesting but it is the linocut prints that have had me reaching for the book several times while away and also since I got home. They are just amazing and there is always something new to see. As I have tried to do stamp carving (I don’t know what to call it really), I can see how he has chosen which parts to cut to make the black image/lines and it is interesting to observe his techniques and choices. The detail is amazing; as is how simple lines can do so much.
Southern Mail/Night Flight by Antoine de Saint Exupery – I have only read Le Petit Prince before, but this is described as poetic and it sounded interesting, though I have never really been interested in flying… But if birds do it, then it may be something I can get into!
The Memoirs of a Survivor by Doris Lessing. This, she says, is part autobiography; but it seems from the description to be a kind of dystopian novel and by far the most frightening-sounding book I have chosen! She is someone I have heard of in terms of her feminist and political views, but I have never read anything she wrote before, so I will see how it goes.
That evening I stayed in resting while they went to pub for a while. It was nice to have much-needed quiet time but when I got lonely they came back for a chat before I went to bed, which was really nice.
The next day, Thursday, the sun was out again so after eating breakfast outside on our tiny bit of decking, I walked down the hill (funny little path through people’s back gardens) with my friend and we went to explore the estuary.
We took pictures of boats and I tried to do a little sketching but it was not really the best circumstances as it was a bit on the parky side with the cool breeze and also not very comfortable/relaxing to sit. Sand was too wet/squidgy so we sat on a concrete block for a while. Had to walk a little way up a hill (very slowly!) then rang my partner to come get me with wheelchair. We stopped for a cuppa in tea shop on way home. I had a big sleep then we watched DVD of The Girl With The Dragon Tatoo, which I really enjoyed. I was the only one who had not read the book, but they said it was a good film version of the original.
Friday I felt pretty rubbish. We tried to go to the pub and play cards in the afternoon but it was too noisy – first a large group of middle-aged women squawking and screeching in hilarity at each other, then when they left another gang of younger people who all laughed really loudly together in great bursts. I felt a bit sad that I can’t enjoy being in groups like that anymore. I could not focus on my cards while that was going on, and it was really uncomfortable for me, so we had to leave. We played a game later in the cottage, but I was still not feeling too hot.
Saturday we had to get up early to leave by ten. My partner had already been home and back again by then with the first load. We actually left at 9.30! I tried to rest once home but my body/brain had obviously become fairly confused by it all and gone into emergency mode. In the afternoon and evening I felt hyper and weird and could not rest, adrenaline taken over and although I knew it was not real energy and I tried not to do too much, I did unpack and tidy up a bit as I knew I wouldn’t be able once it all caught up with me and it is nice to get sorted.
The next couple of days I was in bed until mid afternoon both days and not feeling great but we managed to have some gentle chats, watch a bit of TV and have half a game of scrabble before my friend left early on Tuesday morning.
So it was a mixed bag, but with some really nice experiences. I would have like to have been able to go to the beach a bit more but the inaccessibility mixed with the torrential rain at times (I forgot to mention that!) meant it did not happen. We could not drive around the village much as the parking was so tight we could not move the car much at all, which is the only reason I would not stay in that actual cottage again.
Since the holiday I have been feeling generally pretty awful much of the time, and my cognitive function has been very low for me which has been a surprise really. I wonder how much is due to the new sleeping tablets I am taking. I am going to have to experiment with them. Writing this has taken f-o-r-e-v-e-r!!!
I have however been out a couple of times since being home again, just taking advantage of the fact that my partner has been around a bit more and also not wanting to waste any last sunny days before the end of summer, which feels somehow imminent and over much too quickly. We went into town with the wheelchair, which made it the most pleasant trip to shops I have had in years; it really helped and I bought a few things while I had the opportunity to try things on – it was actually fun! Also we went to a local lighthouse to enjoy a sunny afternoon and just sat and enjoyed watching the waves and feeling the warmth. A gentle but lovely trip out. I finished my camera films off at the lighthouse so I am sending my holiday snaps off to be developed soon! I did not take as many as I would have liked, but I hope there will still be some nice ones there.
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,
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!