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In the last few weeks I have noticed a gradual improvement in my stamina. I think there are a number of things that are potentially contributing to this improvement, which is great whatever the reason, though I would like to know what exactly is helping so that I can continue with it!
About six weeks ago I went to see the POTS specialist and had a list as long as my arm of current and pressing issues – she (rightly) could not deal with them all and it was not a successful appointment (for that and other reasons) and it upset me, but I could not pick and choose between all these issues as I was just overwhelmed by various issues which were all severe. These included: Sleep, Neuropathy and Trigeminal Neuralgia, Muscular Pain and Tension as well as other pain issues, POTS (this was low down the list so you can see how bad the other stuff was!), as well as medication issues.
She gave me a new medication to try for POTS (Diltiazem). I did not start it for the first few days as other outcomes from the appointment were that I should stop taking my sleeping tablet (eszopiclone) to see how I am without it, and also I had only just increased my dosage of Gabapentin (for Neuropathy) over the previous few days, so I did not want to confuse things by doing it all at once.
Also around this time I was having massages of my back, neck shoulders and head which were pretty intensive as the pain and tension there was really getting unbearable. My head felt so tight and painful and my scalp was really tender to touch in places (always is a bit, but was getting very bad and more widespread). My neck felt very painful and weak and was clicking in a very disturbing way low down my cervical spine. Shoulders and upper back, well, the usual. A couple of days after the third massage I felt the tension really lifted and I no longer was taking painkillers every single day. The clicking was also much less frequent – I think the muscles were not clamped so tight around the joints. This was also the time that I started taking the Diltiazem, but I did not think it would do anything and apart from the pain/tension improvement I did not feel any different. A few days later I had my first acupuncture appointment.
It was another couple of weeks before I had the second appointment and did the Tai Chi (and “broke” my back). Then another week until the third, when I started to use the Alpha Stim (see previous post).
During the last few weeks I have noticed a gradual increase in what I can do in the day. I am certainly more active, particularly mentally. I am also sleeping much better and dreaming vividly all the time! I have taken the sleeping tablet again briefly when my mum was here and it confirmed what I thought. It does help me get to sleep but once it wears off in the early hours I feel more awake than I would have done without it. Very odd. As it is I am sleeping much more deeply than I have for a long time with no drugs at all. I am still getting up several times for the toilet but am just getting back into bed and back to sleep easily. I am also sleeping deeply most days and later in the day than I was. It is working for me despite being bad in theory to sleep late in the day (sleep hygiene blah blah). I think the higher dose of Gabapentin is helping to control my nerve related pain and discomfort which used to flare up every time I got out of bed (or in!). It is still there but milder and as long as the bedding is smooth and flat underneath me (a constant battle) it is usually ok. I think with me Gabapentin takes a few weeks to reach it’s maximum efficacy. When I first took it, although there was some improvement it was not for a few weeks that it really felt more consistent, and the same has happened with the higher dosage.
I think perhaps the added activity is also helping the sleep. I am being careful not to overdo it, though some days it is hard to stop pottering about with little things, as they all add up. I have at times got that “wired” feeling of having over-stimulated myself, but I am also recovering more quickly. I have had the odd bad day but overall it’s a very positive trend.
I even went out into town (being pushed in wheelchair). We went to three shops one evening and I did practically all my Christmas shopping. Then we went for an Indian meal before returning home! It was really great to have a meal out and I felt pretty good throughout.
I hate department stores (it was only them that opened late) but I did not get over-hot and being in the wheelchair made it much better for obvious reasons (like being able to go fifty times further!) but also in terms of navigation, which I am rubbish at in shops. It is so nice to allow someone much better at it than me to push me around: she knows where the lifts are, where the exits are, how to best get from one shop to another etc. So much more relaxing!
I also find the decision-making hard but as the shop was not too busy or noisy and I had a list of people to buy for, I just stayed calm and focussed and got through it in no time. Such a relief and great to avoid lots of deliveries coming to the door at random times when I am in bed in the day.
The most amazing thing – yes I am getting there, waffle waffle – was the payback… or should I say LACK OF PAYBACK!!! I rested the following days, but was still pottering around more than I felt I should following such a big trip out. Day three I really felt it would hit, but it didn’t really. This is unheard of in my world. I was only saying to someone more moderately affected than me a few days before that unlike her, I am rarely surprised by how ill I feel, as it is predictable: do something slightly more than usual, second day, bam – feel awful. I take a few more days to rest, then carry on with the usual routines. Even my IBS did not flare up too much after the meal out, which again, it usually does even if I am careful about what I eat.
So I was on cloud nine about that. It really made me feel that the improvements are solid, even if I have not felt quite so strong since then. I feel an upward trend again at last. I am kind of hoping that most of the improvement is down to the new POTS drug. It has been about a year since I felt any real improvement in function from Midodrine, the other drug I take for POTS, which has plateaued really, despite some dosage increase. I also tried Ivabradine which I was not sure about in terms of improvement as I had such severe neuropathy at the time I was in a lot of pain and not sleeping well at all, so I could not tell. I could not get a prescription for that in the end anyway.
If the acupuncture is helping too, then all to the good. If I can get a decent improvement in pain through that then that will help me hopefully to move and relax my muscles more and increase my function again. I like to think so anyway. I feel a little hope creeping in…
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, 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!
what is this? a positive post on my “illness” blog? wonders will never cease! brace yourselves – no moaning will follow!
On Wednesday i received a wheelchair from a hire company. I was expecting a visitor for a couple of nights so got it in time for that (but she has postponed her visit for another time), although i am keeping it for two weeks in total as my Mum is also visiting this Thursday for the weekend, so we can hopefully get out of the house a bit. I am working on a list of possible excursions so we can pick one when the time comes, according to wellness and weather.
On Friday my partner took me on a “walk” in the wheelchair, with the dog around some streets by our house for a test run. I held the dog lead and she pushed me. It worked pretty well, and the wheelchair is light and easy to manoeuvre (It is called Breezy Moonlight, in case you are interested, and is very comfortable). The only problem was that if i had to pull on the dog lead, it did affect the direction of the chair, but this was ok except when she was barking and pulling madly at another dog! I saw streets i have never been down before and we were out half an hour or so and the sun was even almost out… I was not feeling great however, particularly earlier in the day so was amazed…
…by what i managed on Saturday! I booked a shopmobility scooter for midday and got a taxi there, with my partner. I did not think i would be feeling well enough to stay out long but was just desperate for some fun!We went around two or three shops, and i bought some knickers (i have been desperately needing some new knickers for ages but have not been able to get to a shop for months, and although my partner can get some for me, i really wanted to chose my own! So i was very happy with that) and then we went to Fat Face, which i love, and i got some dark grey cords and a stripey zip-up jumper with a hood, and got a free t-shirt 🙂 After all that excitement we had lunch at my favourite place in town, i had a plate of anti-pasti (sundried toms, mozzerella, beans, little mushrooms, grilled courgette and aubergine etc etc) and then a cup of thick hot chocolate that you have to eat with a spoon! Yum. By this time it was 3pm. I was starting to fade but me partner just had a couple of things to get so i decided to stay with her and go home together. We eventually returned the scooter at 4pm and got a taxi home.
I was on such a high that although i lay down a while i did not go to bed properly when i got home, and had a strange high in the evening where i was warbling on about rubbish and singing and was concerned that i may be annoying ( i was assured not, but i am still not sure!). I was so nice to feel so happy and to have been able to do so much after what seems like weeks and weeks of feeling bad almost continuously.
I slept well last night, and went back to bed late morning for my customary extra hour’s nap, but have not yet felt the “pay back”. In fact today has been good as well! I have been out for an hour in the wheelchair in the woods near my house (which i have not been able to set foot in for literally years) and we covered a lot of ground – it has hardly changed since i was last there though, which surprised me. It was nice to smell the woods, which had a hint of autumn about them and toadstools popping up all over.
Then i came back and made two little crumbles! I really miss cooking and feel a real sense of achievement. They also taste great! one is plum, and the other is apple and damson. They were actually very quick and low effort to make. (I don’t have to do my own washing up, so lucky!) I have a little headache brewing despite a quick afternoon nap but am fairly unscathed and just so pleased to have been so active and been out and about so much. My good energy has timed well with the the weather too as it has been dry and even a bit sunny.
So happy days! Just going to rest up as much as possible over the next three days until my Mum visits, and hopefully i can carry on this good trend…