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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.

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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!

 

achillea scabiousWhen 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.

 

 

 

 

basketWe 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.

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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?!!)

ME/CFS Awareness

ME/CFS Awareness

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