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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.
feel the need to empty my thoughts, and thought here would be as good a place as any.
Woke up in lots of pain again today. my back hurts all the way from top to bottom, spreading out from the spine, under my shoulder blades, around my waist, over my shoulders, up into my skull. this pain seems worse recently, though it is always present to some degree. It is also more in my arms and legs than usual, the heavy aching that feels like my muscles are clenched and i should stretch, but i don’t know if that will aggravate it and finding the right positions is hard when standing makes me so dizzy.
I have has some benefit from the Gabapentin, itch-wise if not straightforward pain-wise, a few days with just a few odd sensations but nothing that developed, plus bad for a while after a bath. A big improvement. Then the last two days i have had quite long-lasting attacks in the mornings, and a bit more discomfort at night, though not too bad. I just hope it is not creeping back in. I tried not to get my hopes up, but it feels like a blow. Now i wonder how reducing the anti-histamines will go – are they doing anything or not? I don’t want to have to endure more itching to find out.
Starting to worry about our holiday. Less than 3 weeks to go and i wanted to be feeling better than this. Obviously. Had hoped to get out and about more this summer but it feels like it is slipping away while i battle these pesky but surprisingly incapacitating symptoms on top of the usual fatigue etc. I do now have a wheelchair which is comfortable, and have been out for a little trial run around the local streets and my partner is happy with how it feels to push. I hope we can get out to use it as it took three days to feel able to do that 15 minute “walk”.
I know that i will enjoy my holiday and will have fun during my better moments. My friend is coming to join us for part of it and i only see her once a year and i can’t wait to see her (though she will need re-training now that hugs are so painful if done in the usual way!). It will be good just to hang out, but i suppose i cannot help but want to do a little bit more. I have seen some boat trips that go to a nearby island, for example. I would really like to do that. They say there is a disabled-friendly path on the island, so maybe my wheelchair will go on a boat! Maybe i am being unrealistic. The thought of getting on a boat right now is not apealing, but perhaps my body will comply when the time comes? Sometimes these things come off… but will the rest of the holiday be worse if i do a big thing like that? Can i just have a week where i don’t have to face these conundrums? no? i thought not.
One thing i am really looking forward to is sitting somewhere and doing some drawing outside with my friend. She has agreed to come with me. it will be fun to sketch with a friend. I am pretty sure i can manage that.
I had a fantastic afternoon out with my partner and the dog – we all love the beach – and for once I got to walk around on it WITH THEM!
Usually I walk a short distance from the car to the dunes, sit there while they walk along and then they come back for me. Occasionally I will walk directly to the water’s edge and back if the tide is not too far out to get close to the waves…
This time my partner suggested that she drive us to a different place that she discovered recently, about twice the usual drive. So I lay in bed all morning and waited to see if it felt possible. At 2pm I got up and felt I could give it a go. I have not been good in cars and have only once in the last year (again, quite recently) been in the car for more than 20 minutes each way, but this time it was 40 minutes and (on the way there at least) I felt so relaxed and untroubled by the usual neurological issues that make it so stressful that I almost forgot I was in the car at all! The way home was slightly worse, but still bearable despite going at 70mph or over which usually does my head in and makes me feel awful.
So, a good start. Add to that the beautiful warm day, a light breeze and a slight haze that took the burn out of the sun but left it pleasantly warm even on the coast which was quiet and still. Add to that beautiful rock pools to explore and a marked lack of POTS symptoms. Add to that my new spectacles which we picked up on the way which made me feel a little more unsteady due to the slight prescription change, but feeling stylish all the same. Add to that the pub overlooking the beach for refreshment and conveniences at the end, watching swallows fly right in front of us with forked tails and brown bellies flashing.
I honestly feel like I have been on holiday for a week, not for just a few hours. Holiday from illness and from the norm. Spending such nice time together as a “family” (inverted commas there not for Section 28 style pretend family; but for “family” of two women and their dog!). Holiday from the mundane and predictable. Holiday that brings hope of some change in the air. A realisation that try as I might to make the best of my limited life and value what it gives me; I have not felt that ALIVE for some time.
I am enjoying this recent trend of being able to get out of the house more. It feels so alien to me and so surprising; yet at the same time I can feel that I am getting used to it already, which is worrying. I am trying to take each opportunity as it comes and to enjoy this time. For now it is so joyful to be able to do some new things. The future is unknown (for us all!).
I had doubted myself sometimes over the last year in particular when life was so hard with little let-up. I thought: “Am I really worse than a year or two ago that I can barely go out at all, or am I not going out of fear or anxiety?”. I find it so hard to judge whether I am “better” or “worse” as main symptoms change and evolve which I partly why I write this blog: to help me look back, to remind me of what was possible at different times etc. I can now see that as soon as I truly feel able I jump at any chance I get. I should not doubt myself. It is hard to judge when to try something and when to rest, but I have been doing it for a long time now, and usually I DO know what is best even if I cannot explain the subtle difference in sensations in my body to anyone else. I do know that now I need to rest, happy that it is because I had a great time out and about.
Some good news!
1. I am getting a wheelchair in two or three weeks after being assessed (it was not a gruelling assessment – just a nice woman who had a quick chat and then measured me up!). It is an NHS wheelchair, so it will be on long-term loan to me and they will pay for upkeep/repairs. It will be lightweight and have a headrest and a cushion! I am hoping it will be comfortable.
2. My application for a Blue Badge (disabled parking permit) has also been successful! I think this will be really useful and take the stress out of parking in many situations. It may open up some new options for places to go.
3. The itching has improved. It is still coming and going but is much better and almost as significant is that the night-time (drowsy) anti-histamines i am on seem to be really helping my sleep. The combined effect is that i seem to be sleeping better and my baseline for activity has been raised a little and i feel less manky in general. I have had some really bad days, but in each case it has been one day of payback which i can directly attribute to having done something; rather than just a bad day for no apparent reason. I am liking this new phase very much!
I have left the house a bit more than usual (at least once per week if only for a gentle/brief thing) whereas before i was not going out other than for essential appointments for weeks on end. A big change for me. Things seem a bit more possible and i feel i am recovering faster from doing things. I am still needing to have a sleep in the day, but i am finding it harder to get to sleep until a bit later in the day and am sleeping a little less. Before, I would often get up, have breakfast and check my emails etc. then have no choice but to just crawl back to bed. I feel more alive now. It is not a giant leap, but it is such a welcome break from the drudge of the past year really, which has seemed so retrograde overall, maybe this is the start of a better phase… Early days, it has only been two or three weeks! I know i am getting ahead of myself and am probably overstating the change, but it feels dramatic to me. Fingers crossed this “side effect” of the anti-histamines does not wear off… my mood was really struggling before – the itch was really driving me into depression as it was hard to cope with. I am feeling so relaxed now in comparison and my other pains are better too!
The best things have been going to a local art gallery and seeing the Hokusai print “Wave off Kanagawa” with a friend, and then, a week later, going to Cherryburn with my partner, where Thomas Bewick the local woodcut print-making legend was born. The afternoon at Cherryburn in particular I felt really good and my stamina was good. It was the best I have felt for many, many months. The sun was shining down on us and I felt so lucky to have made it out and to be enjoying a day trip with my partner. It was fun. We even stopped off in a pub for a cuppa on the way home (yes, that is two separate locations in one trip out!).
3. I have some lovely visitors coming to see me over the next few months, some end of May, some Mid-June and then another in August and we are going on holiday with her to a cottage up the coast from here – I am counting the days til my summer holiday! I did not think I would be able to go anywhere this year as I have been finding travel impossible, and also the itching has really limited my ability to sleep anywhere but my own bed (if i am lucky) and i cannot go anywhere without a bath, as showers are also a big no-no. I am still a little concerned about it as my skin is so sensitive to “lumpy” mattresses (and a million other things), and painful even if not always so itchy, but things are much better than they have been and now i think i will survive. We will be close to home anyway if things go wrong, but far away enough to feel like it’s a holiday!
4. I continue to be able to read and have just read The Colour Purple, by Alice Walker. It has sat on my shelves for over a decade and i am so glad i decided to read it at last! So well written, interesting, moving and grounding. I loved it. I have also bought two books in a second-hand shop (it was so great to be able to go in and browse them last week on a quick trip out!). Lolita, by Vladimir Nabokov who several people tell me is worth reading but i have not read anything by him before, and The Lovely Bones by Alice Sebold. I don’t know which to start with!
5. Just remembered another good thing! I am doing more drawing. I have been inspired by Michael Nobbs and his “75 ways to draw more”. The results are a bit mixed but at least i am doing something rather than waiting til i feel good enough to do something i think i actually “good”. A few minutes here of there can produce something, and something is better than nothing! I am being brave and posting them onto Flickr, as there is a “75 ways…” group there. I have had some nice comments from people who are evidently much better at drawing than me, which is generous of them!
So in summary, life doesn’t feel so bad at the moment, long may it last.
Well, it is the week of my staycation… i am home alone (though my Mum will be coming to stay for a little while, which will help the holiday vibe!) and i hope to be able to do a few holiday things 🙂
The weather is currently sunny and warm, which is good. I slept very badly last night, which is not so good; but after another try i now (mid afternoon) feel i can face the day. I am not going anywhere today, and probably not tomorrow either as saving energy for my Mum coming but i will try to lounge in the garden/yard in a holiday fashion in the meantime!
After my previous post about feeling on a high i have not had quite such good energy (i knew that writing about it would jinx it!) and my digestive system has been not so good and dragging me down a bit, so i am hoping for a small turn around this week back to the holiday feeling.
I have booked in massages for myself and my Mum on Tuesday, so if all else fails that is a holiday thing we will do! Right, i better get out into the sun (well, maybe the shade) and get started on my hols!
Well, i went to Scarborough again, to stay at the lovely Fountain’s Court Holistic Health Hotel. I had a real mixed bag of experience, from euphoria to (brief) misery, but i think it was a LOT more good than bad so i have come home happy.
So firstly, the journeys: they went fine and the disabled assistance was good. I felt a bit wobbly at times but it was easier than previous trips and the two hours on the train went quickly. Even better, i managed to call my “personal chauffeur”, Malcolm (my fave taxi driver) to take me home from the station which was a nice end to the experience and we had a nice chat on the way.
I arrived on Wednesday late afternoon and had a rest and relax, and an acupressure thing called Shen Dao where i sat in a chair and it focussed on upper back neck and shoulders. It did not appear to do much as was very light touch, but it was like a 20 minute meditation really as the sun was shining into the room and i could hear the fountain in the garden and it was deeply relaxing. After eating and resting i felt pretty good and went for an evening walk to the park which is next to the hotel and watched the sun setting behind the trees from a bench. There were canada geese, a black swan, a tern, gulls, pigeons and some fluffy ducklings, as well as lots of people having an evening stroll to watch. It was very peaceful, and i was pleased to feel able to pop out after travelling that day.
Thursday i had a great day. I had a little lie down after breakfast then made myself go into town (i could have had a proper sleep but it was so sunny and i did not want to miss the lovely weather). I headed for the shops as i had yet to see the high street despite two previous visits. I have been in need of some pyjama bottoms for ages (as i do live in them!) but rarely get to shops and thought Scarborough might be good as the shops would be more compact as it is a small town. I went into Debenhams and got a pair that are perfect for just a tenner and it only took a few minutes to find them, try them on and purchase them! I sat on a bench with a sense of satisfaction and acheivement – one of my main aims for the holiday done. I also had a feeling of how unbelievably easy it was to “pop in” and get them, and how it was no big deal in the end (i didn’t feel too dizzy even when the shop assistant told me a long story about her boyfriend while i was paying)… such an easy everyday thing for most people, yet so rare for me for be able to do it. I felt lucky to be feeling well at that moment, but sad that such simple things can be so often impossible.
I had more of a wander along the street and popped into a couple more shops then rested on benches, and then i came to the cliff top and looked at the fantastic view over the sea. There was a lift there down the cliff to the beach, which i was not planning on going to, but the lift itself looked fun as it was really old-fashioned with a turnstyle entrance. Inside it was like a little tram and had long wooden benches.
It was 60p and only lasted a few seconds but it was fun anyway. I crossed the road and sat on the beach for a while and watched the donkeys before calling a taxi to take me back to the hotel for lunch.
I had to eat all my meals in the hotel as my diet is so limited there really is nothing i can buy and eat out apart from nut/seed snack bars (which i had with me for emergencies/travelling).
So i had some lunch then had a deep sleep before my reflexology. She has given me reflexology every time i have visited and said my feet seem much less clammy and cold than before and that i look/seem better in myself as well, though she said i look better as i have caught the sun a bit. It is nice that she can tell i am a bit better. My feet still get cold and clammy and it is summer but i do think it is better – the Midodrine must be helping my circulation to my feet. The walk around town probably got it going too!
I talked to other guests when we ate and spent the evening in my room. It was a good day and i felt good.
Did not sleep so well and had no bowel movement in the morning (the reason i am telling you this will become clear!). I had bad stomach pains and felt really like a zombie. I lay in bed all morning kind of half asleep, did not feel up to eating much so just had some soya yogurt for lunch then some rice cakes and honey later. Went back to bed again then made myself get up and got into the hot tub outside mid afternoon, which did make me feel a bit better/more alive and it was good to feel i was doing something. It had rained really heavily since the evening before and was just easing off to a drizzle which was refreshing while in the warm water. I had another lie down, then had a massage and felt a bit better and ate in the evening. The hotel owner washed all the oils out of my hair and i just rested for the evening, hoping that on my last day i would feel better.
Saturday i woke up and felt ok. I had breakfast and then had a very bad upset stomach and was on the toilet for a couple of hours in a lot of pain. I took some medication (i was prepared for such an event!) and it did stop but i felt absolutely drained of all life and energy. I drank lots of water and mint tea. The hotel owner could only make my lunch between 12.30 and 1pm and i was not ready to eat really but knew it was a long time until eating at 7pm and that i would not feel any better if i didn’t, so she made me a small jacket potato with some grilled halloumi cheese on top as that was what i fancied. It did make me feel a bit better, but i could hardly sit at the table to eat it and went right back to bed again.
I was very disappointed by this point as i felt there was little chance i would make it out of the hotel again. As great as my little walk in the park and Thursday’s trip into town were, i did not want them to be the only good points of the holiday.
I woke up gently and did feel a little stronger. I decided to get washed and dressed and see if that felt like too much effort or if i was ok. I did feel ok, though a little shaky, so i decided to go out again. I got a taxi to the Art Gallery, as i thought it would be small and have lots of seating (there was not so much seating but it was managable). It was a bit disappointing actually, so i decided to walk a little again.
Walking felt quite a lot more difficult than it had on Thursday but i had a few bench rests. I tried to look around a shop but there were no seats and i felt awful so i sat in a cafe and had another mint tea. The music was a bit loud but the seat was so good i stayed a while. When i felt a bit stronger i left and walked down a steep hill past an art gallery that i had seen on a previous visit when it was closed. This time it was open! I went in and had a look around – it was packed with interesting pottery, wood turning, jewellry, art and paintings. It included an exhibition by Yuki Snow, which i was impressed with. I bought some postcards of her work (a picture called Hope which obviously i was drawn to, as i am very interested in the concept, as regular readers will know! Also it features a bird, see my other blog for why that matters to me… click here to see the Hope picture!) and a present for my sister’s birthday, which i was very pleased to find as i was a bit stuck about what to get her. I had a long sit on a low seat, leaing on the counter while the gallery owner wrapped my things and wrote my receipt and that was very welcome! I continued down the hill and sat on the beach again. I stayed there for well over an hour, maybe two, and it was lovely. It was quite cloudy and overcast when i sat down and as i sat there it slowly cleared up and got warmer and warmer. By six thirty i had to leave to get back for my meal and i really didn’t want to as it was beautiful! I was out about 3 hours in total which is a lot for me, but sitting on the beach was so relaxing i though i may as well be there as lying in bed so i just stayed. On thursday i was only out for just over an hour so i was pleased to have been out for so long! I had taken an extra half of a midodrine tablet at 4pm as my previous dose was wearing off and it was just when i needed it, and i think that really helped.
I went back and ate, then went up to my room and packed and got my (new) pyjamas on and got into bed. It was 9pm and i felt better than i had all day, and had a really “itchy feet” restless feeling which i did not recognise from recent years – there was nothing on tv and i did not know what to do. I did not want to make myself feel bad for the journey the next day but also i felt that i would not sleep unless i did something as i actually felt that i had energy to burn! So odd, as i never feel like that… maybe it was the extra midodrine!
So, i got dressed again and went for a walk to the park. I wanted to climb the hill in the park to see the garden at the top which everyone says is beautiful, but the gate was closed. I continued walking and went to the beach!
It was a downhill walk and it felt so easy and natural; i cannot remember feeling that walking felt so normal for a very long time. I thought “this is a short walk” and i could see that this was a short walk for most people, and it felt short to me, despite having not being able to even consider it before.
When i turned the corner onto the beach i saw the cliffs with the castle on the top, bathed in a pink light of the sunset opposite, and it took my breath away. (This picture does not do it justice!)
I was so happy that i had been spontaneous and had come down to the beach. The water was a beautiful metallic blue. I walked to the water line and rolled up my trousers as i was filled with the urge to paddle, but on putting a toe on the cold wet sand i thought again. I was concerned that i did not want to ruin feeling so good by freezing my lower legs when i had an uphill walk back again to go, so i played it safe and rolled my trousers down again! (felt a bit silly and hoped no-one was watching me!). I did not walk on the beach but just gently kept moving rather than standing still to keep my blood moving in my legs. I stayed a while until the light was fading and i set off back so that i was not walking through the park in the dark.
The hotel owner had told me that there were bats in the park, and i had not seen any on the first evening, but it was darker this time. I could not see any as i walked, and paused on a bench for a minute just in case, as i thought that seeing some bats would really top off the holiday. As soon as i sat down i saw one! There was just one, but it was really big. I first thought it was a bird, but it moved in a batty way and when i looked closely i could see it’s outline more clearly. It was flying around for a while catching midges (i got bitten twice while i watched) then disappeared.
I walked back to the hotel and i was on such a high, truly buzzing with happiness at the lovely evening and how good i felt walking. It was so amazing and i think all the more special as the day was looking so bad up until mid-afternoon: what a contrast! I never would have thought it was possible to feel so good after such a bad start to the day. I wanted to tell someone about it when i got back but everyone was in bed, so i rang my mum and we had a chat for a while, which was really nice. I took a sleeping tablet and although it took a while to kick in i did sleep well, although i woke up early, as as soon as i opened my eyes i remembered the great evening walk and was smiling and excited again and could not get back to sleep! I did go back to sleep for an hour after breakfast and felt ok on the journey which was a relief.
I have not felt great since getting home, my stomach issues have settled down a bit but were making me feel quite queasy the day after i got back, which is not something i feel much usually. I am starting to feel better today though (wednesday) which is pretty good and quick in terms of payback so i am happy about that too.
I think things are slowly changing for me – although it is very hit and miss. For a long time i was not having any times where i felt really good, even for a short time. I was not able to overdo it, as i had no reserves of stamina to draw on (or doing anything was overdoing it!). I feel that i have a bit more to work with these days, a bit more variation, which if carefully managed could really improve my life. I hope it is the Midodrine that has made these last few weeks easier (rather than a random blip) as that means things may continue to slowly continue to improve… I feel i am getting some Hope back.
August will be a busy month with visits from my Mum (my staycation!) and from a good friend who lives in Barcelona. I really hope to have some good energy at the right moments!
Well, it is that time of year, after all.
It will be my second holiday as i went to Holy Island (with my partner and dog) in February, which was a great week and did me so much good. See my post about that here. I was only saying recently that a) the year is flying by and i don’t feel like i have done much apart from our holiday and b) if it wasn’t for that holiday i would not have taken many good pictures this year as yet, which was my main resolution for the year: to get out more to photogenic places!
So this time i am off to Scarborough again for 4 nights. I am going to the same place i have been twice before, once with my sister and once alone. This time i will also be alone. My partner is going to Spain for work reasons and i really struggled last time she was away, and had quite a lot of “payback” in recovery from being alone, so i thought i would go away too. At least this way i can have my meals made for me, have no washing up to do and hopefully have some fun as well along the way. If i am going to overdo it, i may as well have some fun!
It was/is a bit of a gamble. I had the idea a couple of months ago and was operating at such a low level health-wise then that i thought there was no point in going, as i would find the journey too hard and not be able to leave the hotel at all. The last few weeks though, apart from the odd blip and a series of very bad headaches, I have been feeling stronger and i think now there is a good chance i will deal with the journey ok. That is, as long as the disabled assistance turns up WITH the wheelchair I have booked to help me change trains, unlike they did at one point in my journey last time i went – “they are all being used” was the excuse… hmm i only booked 2 months ago!!
I also think because it is summer this time i will be able to sit outside more easily. Last time i only left the hotel once and went for drink in a pub as it was December and there were not many warm options. This time i can sit on the beach, in the park, or just in the garden at the hotel and that will be much better. I am taking a couple of cameras and a notebook and hope to be creative too (maybe a haiku or two!?). (i know i am repeating myself from a previous post here, but never mind, it is worth repeating myself when i am excited!).
I have been able to read more lately as well, as my eye muscles seem stronger and my blurred vision is less regular and my powers of concentration are a bit better too; so i am taking a (hopefully) good book of short stories to read as well: The Winter Book by Tove Janssen (of Moomin fame)… she wrote one called The Summer Book too, but why be seasonally correct?! I have read the intro by Ali Smith (who i admire greatly) and she makes it sound so amazing that i hope the book is not a let down after such high praise!
I can have a massage or two while i am there and hope to meet and chat to some interesting people like i did last time. The hotel owner has promised to help me wash my hair mid-visit and to cater for my odd dietary needs, so off i go!
Wish me luck! I shall catch up with you all next week…
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.