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This may seem like a silly question, of course i am very happy and excited to be having some much better days, but i do have mixed feelings…
I also know that i am getting very ahead of myself in writing this at all as it is only a week or so that i have had this real buzz, and hardly all day everyday… it could be just a post-holiday buzz? It does come on the back of gradual improvements over the last few weeks/months and my change to a higher dose of Midodrine a couple of weeks ago though, so maybe it may be here to stay???
Firstly let me explain. I went to Scarborough for my holiday, i got back on Sunday (a week ago). I rested for three days and did not feel too great initially, but by Thursday i felt up to going to see a friend and her baby. I went by taxi both ways as it would be a bus and then a bit of a walk otherwise, and i wanted to save energy for the visit and not overdo it so soon after the holiday. I was there about two and a half hours, mostly lying on her sofa but chatting and playing/interacting with her son. I also had my favourite taxi driver both ways and we did a lot of talking on the journeys, so it was quite an extended time of activity. I had a great time, and although i was exhausted afterwards i only had one rest day, then went out again yesterday!
So yesterday i went with my partner to the garden centre. They have a wheelchair available and we have used it before, but as i only wanted to look at plants and felt pretty good, we did not bother. I sat down a couple of times but felt fine, and we were there quite a while in the end. I was desperate for the toilet by the end and they didn’t seem to have one, so we stopped by a pub along the road and sat outside for a quick cuppa and to use the facilities. Then we went to Tesco and i went into the health food shop which is near the entrance and got a few things, then we went home. All in all this was a lot of walking about and i had felt good and really enjoyed it. We got some beautiful plants to cheer up the backyard, a couple for the front garden and two freebies as well!
When we got home i felt a bit less ok, so lunch was made for me and i had a lie down. However i could not sleep as too excited and after a doze i got up again and we did some potting up type activity (i was mostly instructing but still active). Then in the evening we sat outside and had a BBQ in the yard, admiring the new plants in the sunshine.
We stayed out until 8pm playing cards and chatting and it was really good. I was amazed at my stamina as it had been a long day but i was buzzing with happiness and excitement about feeling so good, just as i was on my last day in Scarborough. The Red Arrows flew by and did an amazing stunt right where we could see it, a tight and high loop in the sky, in formation, with them all plummeting earthwards together, then fanning and levelling out at the last minute – leaving a big smokey loop in the sky… it was very dramatic and we were so pleased to have seen it as it was over in a flash.
I was tired by the time we went inside but very happy. One possible warning sign of overdoing it is that i have had a lot more of a symptom i have had on and off before, which i know a lot of people with ME do get. It is like a shiver or a twitch when you are not cold. It is quite a big shiver and i have been getting it in the muscles of my shoulders and my whole upper body shakes spontaneously, particularly in the evenings when i am tired. On the up side, my muscular pain and tension has been a lot better in that area this week (since my holiday massage and such) and the shiver is painless and feels a bit like a releasing of tension, so i am not too bothered. Heat seems to help relieve it. I think it is a neurological/nerve type symptom. Maybe it is like mini electric shocks, as it does feel a bit like a TENS machine induced spasm, caused by or linked to my new extra excitable brain activity!?! I met a woman who had it very badly at a support group for ME and she would involuntarily suck in her breath when she had the shiver and it made a lot of noise due to that and was quite distracting during conversation… another unexplained ME oddity!
So it’s all good. Today i have slept more than usual and only done a bit of emailing and writing this, but have not felt too bad. These things, if i managed them at all (and certainly not in such quick succession) would take days or weeks to recover from a few months ago.
So why am i feeling a bit strange about all this? I really don’t know how to explain it…
Firstly i have a feeling that i am somehow cheating someone or something, that this is not my reality, my life, my lot. This feeling is quite worrying, but it is no wonder i just expect to feel awful all the time, i suppose, based on the last few years. It is a survival strategy not to expect anything to change. I think also i have to spend so much time explaining what i can’t do for benefits reasons and to people who share my life or new people i meet, that when things change it is as if i have been lying… hmm that sounds ridiculous doesn’t it? Change is always an adjustment…
Maybe i feel bad because i am getting Midodrine for my POTS (the very likely main reason for me feeling better) which is unavailable to everyone else and i know they may read this and it is always hard to read that other people are improving when you are not, usually i am the one who is not, but when will their turn come?
Also, I think it just feels a bit surreal to me, very unreal, and perhaps i cannot trust it to last or continue to improve… maybe i am coming around to that dangerous concept of Hope again! I cannot help but let my mind get carried away with itself; from dreaming of day trips and socialising, to doing courses, travelling places… and all the things that may become possible if things improve even more! (hmm better stop that!) I am already almost expecting August to be great… very dangerous territory…
It is mostly the euphoria i am feeling that feels strange. I am getting very high and excited (is better circulation to my brain allowing such feelings?) about quite simple things… most people do not get overly excited and “high” about a short wander to the beach, or a trip to the garden centre on a sunny day, do they? I wonder if it is just because it is so amazing to be able to go and even more amazing/unusual to feel good while doing these things, rather than just surviving them? If so, will the excitement fade if it becomes more everyday and normal to feel this good? (I hope not.) I am not getting any low mood as a come down, but i almost feel like i am on drugs at these times! Is it just my brain chemicals playing up? Was i depressed before but did not know it?
Anyway, I am trying to just take each day at a time, not to overdo it and rest up in between things. Importantly i must remember how bad i still feel regularly, how my life is set up based on me being barely able to look after myself/do much and if i reintroduced all the self care and household tasks that i do not do, i would not feel so positive; that what i am able to do is a big improvement for me but still very low level for most and I should not get carried away on the very odd but FUN tide of euphoria and just see what happens…
(but who can blame me?!!)
I am back from my week’s holiday and i can say it was a successful trip 🙂
We went to the Holy Island of Lindisfarne, which is right up in the far North East of England, just a few miles from the the Scottish Border. It is literally an island and is cut off from the mainland by the tide twice a day. It was nice to feel cut off from the rest of the world by the tide, and also by the lack of internet access. It felt like a retreat from my usual life and a chance to do things that i do not usually get to do.
Things i wanted from the week were:
- to spend more time outdoors and feel part of the landscape, not just be a “tourist” passing by in a car, as i often do these days
- to experience being outside at different times of day, as i usually only go out in the middle of the day (if at all!)
- to take some good photos
- to have some fun!
- to go on a pub crawl! (As there are at least three pubs in the very small village).
- to learn more about the Lindisfarne gospels by going to the Lindisfarne Centre on the island
- to do creative things (painting/drawing etc)
So, which ones did i manage?
Well, i did most of them… i did not get to the Lindisfarne Centre, though i did read a bit about the Gospels and the history of the Island in books that were in the cottage we stayed in. I did not manage to do much creativity either – i wrote one haiku (see below), but there was not energy or time for other bigger creative activities after walking about the island a bit and going out for occasional pub meals, and a trip up to Scotland to a craft centre and tiny fishing village and sleeping and resting between each thing. Also i did not manage a “pub crawl” as such, though i did go into several different ones. Seeing as i don’t (can’t) drink alcohol it would not have been very authentic anyway…
I was really pleased to do some walking around the village and also along the shoreline and harbour. The shops and pubs were just metres from the cottage, which made little trips out to them manageable. I walked quite far on a couple of occasions and it was so nice to feel the ground under my feet, feel my body “working”, see the lovely views, take some photos and feel connected to the landscape, to be in it and part of it, in a way that only “walking it” can do for me.
I did not always feel great by the time i got back and i think i am still recovering from the longest walk i did on Thursday, and it is now Sunday! But it was so worth it and i had to seize the opportunity while i was in that beautiful place. It seems that, try as i might to change, the things that give me most joy are still the things i used to enjoy as a “well” person. It was a treat to be able to do it, but i wish i could find something to replace that with for it’s therapeutic & mood enhancing benefits, enjoyment and buzz that i could do almost every day, as i used to go for a walk all the time.
On that big walk i felt well and my body behaved itself and i did not feel any POTS symptoms really, despite being upright (with regular sitting rests on benches) for about an hour. I often stood still for taking pictures and it was so nice to feel good, reasonably strong and able. Although i have felt that i overdid it and am still recovering energy-wise, there would be no way i could have managed that without the POTS medication, as i was rarely able to walk for more than five minutes before and any movements were slow and so much effort. I now find that sometimes, if i pick the best time of day and have had enough rest etc etc, i can move in quite a normal way, get up from a chair quite quickly and walk at a reasonable speed, at least for a short time. That is really nice, and gives me some hope for having some nice wanders about this summer. I miss wandering!
I climbed(!) a small hill to take this (and many other) pictures. All these photos are just using my phone as i have not got my films developed yet. I hope there will be some better ones to come!
One of the main highlights of the week for me was when we went out in the evening and sat on a bench overlooking the castle in the dark. We took the torch from the cottage which was useful as there was only one street light on the way! It was very cold so we wrapped up well. It was really quiet and there was no-one around. We sat on the bench and looked out to small lights on the water, out to sea and along the coastline. There was a bunch of flowers tied to the bench and the cellophane rustled in the breeze and we could hear the water lapping gently at the shore just a few feet in front of us (though we could not see it!). The best bit was the castle. We could not see it, but every minute or so it was lit up from behind by the light of a lighthouse which was out of sight behind the castle mound. The light was green and not very bright and we could just make out the outline of the castle before it disappeared back into the darkness. I wrote a Haiku about it:
Dark castle mound: back-lit by
Rotating green light
Obviously i could not take a picture of it, as it was far too dark but now the image is cemented into my mind. You will have to imagine it too!
After the success of the evening walk, a few days later we tried a dawn walk. I set my alarm for half past six and out we went back to the same area. My body was not quite so happy about that and the dawn was grey and not very inspiring! I was hoping for a glorious sunrise but you can’t win them all… here is one picture i took on my phone once it got light enough that morning just before going (crawling zombie-like) back to the cottage for some breakfast then back to bed.
It was often cloudy during the holiday, which was a disappointment, as it limited when i could take good pictures but the sun did come out on my big walk on Thursday so i can’t wait to get the films developed and see what comes out!
I feel really happy that i managed to do so much while away, and coped with the awful bed and unsupportive chairs and being away from all my other home comforts quite well too. It took a little while to relax into it but i really feel better for having a change of scenry and a break from the usual routines. Travelling anywhere is such a challenge and it doesn’t always work out very well, so i am so pleased this was a success!
This afternoon i had my first Hot Stones Massage. It was really good! I had it done just a few doors from my house, so not far to stagger home again and it is on special offer – £30 for all of August (usually£45) – and it lasted nearly one and half hours!
It was really nice because it covered practically my whole body and i was amazed by how many painful and tense areas i had – i knew my upper back, neck, scalp and shoulders were bad as i have been in quite a bit of pain and had daily headaches since coming back from the festival as it was hard to care for my posture when away from my usual chair, bed and travelling etc. – but i was amazed by how bad my leg muscles were and also in the bridge of my feet. My upper arms were also very sore. I knew my head was tense and i could have done with another half an hour just focussed on that, but apart from that the massage was very focussed where it was most needed… So i have booked another one for the same time next week 🙂 i can’t wait… i think that two in a row will mean that things have chance to improve much more: cumulative effect! I am going to try extra hard this week to keep my newly massaged body stretched, relaxed and massaged where i can to keep up the momentum!
The stones were really nice – they start off very hot but cool quite quickly so the person keeps leaving to swap them over so it is not like a normal massage where the hands barely leave you for the whole time, but you are left with the heat of the stone in-between times so it is still very relaxing. The stones are rubbed over you quite gently but it is supposedly the heat which penetrates into the muscle and releases the tensions. My back would not even click when i sat up and felt amazing, so i think it definately works! When she had done each foot she placed three little stones between my toes! That made me laugh – she said that quite a lot of people’s toes can’t hold them in place… a talent i didn’t know i had! Also after doing my arms she left a large stone in each hand, which was nice to hold.
Since i went to Scarborough i have had a new perspective on alternative therapies – i have tried quite a few before, but went through a phase of thinking what is the point, as however nice they are, none will ever “make me better” and you can spend so much money on them – but when in Scarborough and having a treatment of some kind each day i realised that the value gained from something that helps you to relax, takes you away temporarily from reality and gives you a sense of well-being and makes you feel good can be immense and although may not heal you in any absolute sense, can contribute to positive change on some level, even if it is just in mood. If it can help shake these tension headaches away i will be happy as i am taking painkillers every evening and i don’t feel comfortable with that for more than a couple of days in a row, but have had no choice lately. Obviously i can’t keep having a massage every week, but i think it is good to know it is there for when i really need it and so convenient being on my doorstep… roll on next Tuesday!
Well it is one week since i started taking my energy revitalisation vitamin power stuff, along with CoQ10, L-Carnetine, B-vitamins etc and over a week since i started to take D-Ribose, all as recommended in the book From Fatigued to Fantastic!
Although you are not supposed to feel any better so quickly i am a bit disappointed to have missed out on the two day high reported by Rachel!
I have had the odd moment of feeling good this last week, although not like real “lift off”, just happiness to have a whole day without head pains and so on… although i have had them most days and also bad heaviness/aching in my legs and back & arm pains that feel muscular and it’s a bit worse than usual… so if the d-ribose helps with muscular recovery then what is causing that? (I think tension caused by going to CBT and thinking about it too much may be partly to blame for the muscular aches – my thighs must tense when i am stressed as often they shake/tremble/ache after i speak to people intensely… wierd!). Walking the dog for even 10 minutes has felt almost impossible most days and i have shuffled to the nearest bench, told her to “get on with it” and had trouble getting up again. So maybe next week if these symptoms ease i will be able to see it as “proof” something is having an effect!
I am not too downhearted about it, it’s early days and i am not expecting miracles, but i am hoping i find my tasks this week is a bit easier to complete… fingers crossed!