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Yeah! At last i went out in the snow! My partner shovelled the snow away so we could get the car out and drove me up the road to the woods. The snow was crunchy and quite deep but not too hard to walk in, the sun was out and I felt well enough to wander about for quite a while. I sat on a bench a while and the snow beneath me did not even melt! It was pretty cold but the sun made it feel not too bracing. It was such a relief to get out of the house and to be able to seize the moment when there was sun and fresh snow. It was breathtakingly beautiful.

I took some photos on my phone, some of which i will post here. I took others on film so i have not got them yet.

And here I am in action with my holga! I did not take this one, evidently. Oh, it was such therapy!

(I don’t care how bad i feel as a consequence, it was worth it.)

Well, it’s 2010. Happy New Year to all of you! As most of you have health problems like my own i would like to wish you all a better year in your bodies than last. I am certainly wishing it for myself, as i don’t want to be negative but this last year has been bad on that front. A little improvement would go a long way and just make life a little easier for myself and those around me. I hope we can all see some personal progress and if not, then some medical/research progress would come a close second so we can see some hope of change a-coming…

Here is a candle flame i took a picture of last night, seeing in the new year:

So i woke up this morning to unexpected snow! My partner went out and brought back some beautiful photos:

I desperately wanted to go out and take some myself, but i resisted as i knew it was a bad plan. I took a picture of my redcurrant bush through the window, which looked nice:

There is more snow forecast so i am hoping to take some more another day and maybe leave the house, even if i don’t get far there might be something different to see. It will certainly make things look nicer than usual!

As i contemplate the New Year, my concerns and feelings are much the same as i expect they were last year… how to manage my time and energies to allow me to do things i enjoy and not get bogged down in essential daily activities and medical/health-related appointments (although to actually be able to go to them would be a change on recent form!); what to focus that “excess” energy on for the most benefit to my mental/physical wellbeing; how to express myself creatively; how to spend time with people; how to give my partner a break from my illness and the extra pressure it creates; how to give myself a sense of a break, when i cannot really have one; how to plan for the future when i don’t know whether to assume the best or the worst or something in between…

Most of all i just want to see a bit of improvement, to be able to do a little more, go out a little more, eat more varied foods, be in less pain, feel a little stronger and have some concrete basis for hope that the rest of my life will not be like this, or worse. I would hate to look back on this past year and say that compared to the next it was a good one, but i know it is possible. I am a little scared of that. All i can do is stay strong and as positive as i can and see what happens, i am willing it to be better, i don’t know if that will help but it is all i have got, so that is what i will do. Onwards…

Well, so much has been happening… and now at last time to relax a bit and report back…

Last weekend (end of November), i went to Scarborough! On my own!

Well, it is a two hour train journey and i booked disabled assistance for the first time. It went well and there was (usually) someone to meet me with a wheelchair to push me between trains and to carry my luggage as well. There was no-one waiting for me at Scarborough station, but my train pulled in right by the exit and there was no queue for taxis so i managed fine. When i arrived back to my home station there was a man to meet me but no wheelchair, as they were all in use… not really good enough when i had booked two months in advance! It was not too far to walk to the the station exit and he pulled my case for me, but the taxi queue was long so i had to take out my tiny folding stool and sit on it, but keep getting up to shuffle forwards as the line moved along… not exactly comfortable and the reason i booked the chair was to help me get to the taxi as it is standing in particular that is hard for me… as well as walking for more than a few minutes… well nothing is perfect and luckily i was not feeling too awful, but i could easily have been… he offered to queue with me but i told him could go as he was no use without the wheelchair… so i would say 7/10 for service… I was pleased that i could step off the train myself and was not dependant on them coming on to get me as i would have found that stressful, and i don’t think they are 100% reliable based on my limited experience. I will be travelling by train at Christmas as well, hopefully only one way, but a much longer journey and have booked assistance again. I hope it works then as well!

By the time i got to Scarborough i was really drained and felt very weak. I booked into the hotel (the same place i went last time) and could not really take in what was being said to me as my brain was shutting down… I lay down for a while and felt a bit better though. My feet were like ice and despite an hour and a half with a hot water bottle, when i went downstairs for my first treatment – reflexology – my feet were still not properly thawed out! The woman who was doing it said she couldn’t decide if they were warm or not as they felt so strange! My circulatory system is not well behaved.

I had another lie down then ate at the hotel that evening, and got talking to a really nice couple while i ate. The food was really good and it was nice to chat to new people and i really enjoyed the opportunity to be sociable as i find i rarely meet new people and have the opportunity or energy to talk properly.

The next day i had breakfast brought to me in bed (yes, this is a heavenly place) and then had a shiatsu massage (my first ever and really good – she did a gentle version for me which felt just enough to do something but not hard enough to cause any flare ups or pain – afterwards i felt looser and that everything was flowing better) then another sleep. I felt quite good then so i got a taxi down to the harbour and sat outside watching the sunset!


It was not as cold as i expected (i was well wrapped up) and it was so nice to be out in the fresh air. I wrote some postcards which i got from a shop next door. Once the sun went down and i finished my hot drink i went into a pub to warm up for a bit, (this is the view from inside the pub, of the remains of the sunset)


then went back to the hotel feeling pleased that i have made it out and about, as i feared i would not be up to leaving the hotel much and maybe not brave enough on my own. See my other blog for another picture of the sunset. I ate in the hotel again and chatted to the same couple which was good. I took a sleeping tablet each night i was there to maximise my chances of having good sleep and therefore good days!

The next day I had an aromatherapy facial in the morning which turned out to be more like a shoulder, neck, face and scalp massage with a face mask thrown in (i could have lived without that bit as my face didn’t seem any different afterwards) but the massage part was amazing and she really gave my scalp and head a thorough going over and as my head is always tense and painful it felt as if it released so much tension and got the circulation going really well. I had a nap, then my Mum came to visit for lunch as she was coincidentally in the area! She drove me five minutes along the road to a cafe and we had a nice lunch, then we drove all along the seafront (north and south bays) to get a feel of the place and see the sun setting again before going back for a cuppa in the hotel. I felt a lot weaker than the day before, and quite lightheaded and became tired quite quickly but it was still really nice. I had another sleep before the evening meal again, which i ate with the hotel owner (Helen) as i was the only guest at this point! It was nice of her to eat with me as it would have felt odd to sit on my own.

Got up the next morning very early for my train and Helen drove me to the station as she had time, which was very kind and gave me a big hug goodbye. It is so nice to know that i have somewhere to go for a change of scenery where even if i am really ill and need to stay in bed i will be looked after :). I felt a sense of independance in managing to go away and largely felt fine while i was there. I wonder if the new tablets for POTS i am taking helped? Hard to tell. I feel it is so important to keep trying to do things, within reason and with careful planning, or i would miss out on so much and get stuck in a rut of thinking i can’t do anything or go anywhere… As my partner went to both Shanghai and New York this year and i was unable to go due to my poor health i felt it was important to try to have my own holiday as well.

Home again:

So then i got back home and have had a crazy week! I have had to abandon all routines, and have struggled to fit in my daytime naps most days, or have had them much later than i would like. I have had to get up early, then stay up for deliveries and post (the downside of doing xmas shopping online), then be in for the dog walkers to pick up and drop the dog back an hour later, then one day the cleaners came after that (after cancelling last minute earlier in the week, so i had already prepared for them and stayed up). We have had men in to fit new doors… well i use the past tense but they are not finished so we still have gaping holes around the new doors letting in a lot of literally freezing air (and probably snow flakes too!). They were supposed to come back the next morning to finish the job but the man’s axle on his van bent from driving on the ice, then was supposed to come the next day and he broke his little finger by slipping off his icy ladder. So fingers crossed (those that can) he will be able to come back tomorrow! Added to this the boiler broke down so we had no hot water (except the shower that i can’t really use for too many complicated reasons to go into now) and no heating except one electric radiator and a gas fire. Add in many drafts from front and back doors not sealed and sub zero temperatures and you get the picture… So i was ringing around, organising men to come and do these jobs, making numerous cups of coffee, fetching things for them and generally doing things i knew i shouldn’t, but did not feel i really had any choice.

Also my partner’s parents arrived on Friday night for the weekend, and the boiler was only fixed in the nick of time! The house was a tip from having the door men in and it all felt like chaos. The visitors left yesterday and today i am just going to do very little and see how my body is… i feel that i have been running on adrenaline for days and i am not sure what will happen next!  Again maybe the POTS tablets have been helping me cope as i have been more active and largely coping… who knows?! I am certainly still feeling POTS symptoms, but i am not sure if it is maybe less severe. I am unsure what feelings of weakness etc are from POTS and which are from ME, so it is hard to judge, especially when my usual routines have been so broken.

Also the boiler stopped again this morning… it has resumed activity after we pressed the reset button, but i suspect that the problem may not be completely solved, despite a new flue fan… i am hoping for an uneventful week once the door men leave tomorrow, what are the chances?

ME/CFS Awareness

ME/CFS Awareness


December 2020