New Phase: Part Three of Three

On March 15, 2018, in M.E. diary, by Sally

I have been in my perfect cottage for almost 2 years now. I am still slowly getting things how I want them which is unusual for me. In the past, everything would have been unpacked and put away before bed the first night and I would have half-killed myself doing it. I put my mattress on the sitting room floor and slept there for about a month, surrounded by boxes, because I had no furniture. I sold it all apart from my very expensive mattress, my electric piano, an Ikea chair, a side table – the first piece of furniture I ever brought aged 17, and a folding table that would fit anywhere. The cottage is so small that none of my old furniture would fit in it. Everything in the cottage has to be flat-packed and built in the room (including the sofa!) so I needed to take some time to find furniture that would fit in the house, literally and aesthetically.

One of the things ME has given me is unlimited patience (for most things). Before ME, if I wanted it, I wanted it now. I couldn’t hold on for anything. Everything that needed to be done was done immediately and fully – no waiting and certainly no resting until the job was done.

I am pretty sure I have written this in a previous post but I clearly remember the day that changed my life. I was already very ill and had been in bed for a few weeks. One morning the sun was shining and it showed that the house was really dusty and dirty. I decided that I was going to clean it. My routine before I became ill had been to start at the top and work down. Every Friday I would clean windows, skirting boards, under everything, change beds, hoover, dust, tidy as I went and I could get the whole house immaculate in four hours. I wouldn’t be able to stop until it was perfect. So on this day, I stripped the bed, which at this point was not being done on a weekly basis, and went down to get some clean sheets. Because I knew that going up and down stairs was one of the things that took the most energy from me I decided to bring the hoover upstairs with the sheets to save me another trip downstairs. I got back into the bedroom (I’m on the top floor of a three storey house), left the hoover in the middle of the room, put the sheets on the window sill, looked at my bed, climbed into it with no sheets, duvet cover or pillowcases and that is where I stayed for the next three days. Literally only getting out to crawl to the en-suite loo and once a day to go downstairs to the kitchen for a drink or a banana. On the first day I would wake and look at the hoover and feel really irritated that it was in the middle of the room and needed moving back to its home. On the second day I was thinking it won’t kill me to have it there one more day and by the third day I didn’t care if it stayed there forever. I realised that it wasn’t hurting me there and that it really did not matter where it was. Those three days not only changed but probably saved my life. I no longer feel compelled to do anything. I am not obliged to kill myself to achieve something that no one else would even notice. I no longer need to be perfect in everything I do! It makes life SO much easier, and happier!

Sooooo, I live down a footpath in a little jumble of cottages and gardens. I have a really pretty front garden and behind me, out of my back windows, I can see someone elses really pretty garden. I have furniture and last winter had a cabin (which my kind and lovely youngest son made possible) built in my garden (it’s been insulated and plastered inside and has electric light and sockets (Christmas present from my fab brother) which will be my spare room and music/craft room. It is full of things (cr*p) from the old house which were stored in a lockup waiting for me to eBay and car boot and which I have promised myself will be taken to the dump/charity shop if I haven’t managed to unload them by the end of May 2018. I fully intend to have a summer house, come spare room, come music/craft room this summer. The piano has just been moved out of my tiny sitting room and I love how much bigger the room now seems.

Update: May 2019 Garden is beautiful and my cabin is now empty of cr*p and a very pretty fully functioning, and used, spare room.

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Im ok :-)

On April 2, 2011, in M.E. diary, by Sally

Im ok 🙂 and thanks for the texts. I haven’t written for a while and im not sure why yet but maybe writing will help me work it out.

I saw Michelle my Occupational Therapist on Wednesday and had high hopes for the meeting which surprisingly surpassed even the high level of my hopes (which are renowned for being overly high). My cognitive/retaining powers went about 30 minutes into the meeting and i started to write things down which is really good because i cant remember anything (clearly) from before my brain gave up so at least i have some notes. They are a bit random though:

1.  There are two kinds of tears, the tears im experiencing are release tears. Release of a chemical/hormonal build up in my body – probaby adrenaline.  (I remember Michelle saying that if your face goes back to normal a minute or so after crying they are release tears and if it stays piggy eyed and swollen for hours its the other type from expressing inexpressible emotion – they arent Michelles actual words because of course ive paraphrased as normal.)

2. Emotional Intelligence (E.I.) (Apparently i have  exceptionally good E.I., which, (i quote) ‘refers to the ability to assess and manage your own emotions as well as that of others or even of entire groups’.) Woo Hoo!!

3. Every time you make a choice about how you behave let yourself make the helpful choice. (This was to do with Helpful and Unhelpful strategies – a list of which i read out and which were what gave Michelle the idea that i have good E.I. as id already worked out a lot of the things i did to cover up my ME/CFS. I just have to make conscious choices now that i know what is useful/positive and what isnt.)

4. I am busy, hardworking and an effective time manager. (Two parts here a) Time Management i could do for a living – i have spent my whole life managing time and energy and now i know why!! ME/CFS has been ruling my life. But i am great at it and can see instantly if someone is doing something the long way rather than the short way. I also have a great knack of fitting things into car boots/alcoves/ boxes etc and being able to see almost to the millimetre if they will go in or not. Efficiency in every way seems to be my byword. b) The busy and hardworking bit came about because Michelle asked why i felt i had to get everything finished. Obviously because ultimately im a lazy person i said. I always think that if i just get this job done i can have the afternoon off, then another job comes up and i think if i get this done i can have all day tomorrow off but tomorrow never comes because there is always another job so i never get a day off. She asked why i think im lazy because im so clearly not. Well, i said, my mum always said i was …………………. i can tell you that was one of the most massive pennies that ever dropped. Id come home from school exhausted and want to lie down or spend the morning in bed on a sunday – i remember often during my childhood trying  to prove i wasn’t lazy. I certainly wasn’t lazy because i didn’t want to learn the piano any more – i just hated the type of music i was being taught. I was reminded that id had a serious bout of glandular Fever at 11 and probably spent a lot of my childhood recovering from that. So many things are explainable in hindsight!!)

5. I have everything I need to a much greater level than other people Michelle works with. (Wow! I cant believe she said/thinks that. She said i have all the knowledge already inside me to make a step by step recovery and that i have already made massive steps towards it. I have to agree that just finding out what was wrong with me stopped dead an awful lot of my unhelpfuil stratagies because as soon as i knew, so many things became obvious. I am amazed at what i already know/have worked out.)

6. All behaviour has a positive intention – a presupposition of NLP. (I know a little bit about this as i did a weeks NLP course a couple of years ago. I loved it but dont remember a great deal of it although now ive started to look it all up again im amazed at how much i have remembered subconsciously. Even when someone does something dreadful to you or others and you cant work out what the intention is it will always be to their good even if its not to yours and even if the outcome is negative to them it had a positive intent in the beginning. As is my wont, ive been trying to come up with an action that hasnt got positive intent but have so far failed. Any suggestions please add to comments below.)

Michelle also said i self hypnotise ……  i find it so easy to put things i dont want to think about into a little box and forget them. Its just struck me – i wonder what else ive hidden in this box that i dont want to think about.  I find that a bit of a scary thought.

So, i still dont know whats making me reticent about writing but i’ll start thinking about it and im sure i’ll come up with an answer – i’ll pull it from the little box i hide things in and maybe i’ll pull a skeleton or two out with it?



Hair today

On March 24, 2011, in M.E. diary, by Sally

I realised this morning that i nearly always have to make myself go out but once im actually out its manageable.

Had a hair appointment today, my hair is my thing, so if you know me you will know that its one of my favourite things to do. I LOVE having my hair done but nowadays its really hard to get motivated and if i could think of a really good excuse i would probably have put it off today, like i did on Saturday. I could have thought of a really good excuse, of course, but i figured id still have to go next week or the week after and i did really want it done. Its a strange thing to have to think about. If i was well id just wake up thinking ‘great im having my hair done today’ rush around getting my work sorted and housework done, id have arranged to meet a friend for lunch weeks ago instead of the last minute. and off id go. Its a blummin’ nuisance to have to think about everything before i do it. It was actually quite uplifting. Lisa, my hairdresser is really positve and easy to be with. I, however, turned into an ME bore which is a bit embarrassing – i really do need to find a short, understandable explanation when someone asks about ME and make sure i dont drone on and on about it.

Just realised i should have taken a photo of my new hair for my blog coz it will never look like this again. Too late now coz ive taken off my makeup and im sorry but i cant find the energy to do that again. Plus, I definitley couldnt put anyone through the trauma of seeing me look as poorly and pale as i do without it.

Having my hair done did perk me up though and what a blooming beautiful day it was today!! Jon rang when i got to hairdressers and i had a few minutes to wait so i called him back and stood outside in the sun – it felt like summer to me it was actually hot!! Car said 19 degrees when i got back into it.

And here at the bottom of the page is a picture of mewriting this post tonight, very tired, with no makeup on  – it could do with a brush but my hair still looks great though and im feeling positive and happy.




Testing myself

On March 23, 2011, in M.E. diary, by Sally

I woke up early this morning feeling 50/50. My bedroom is a dust mountain and i really should change my sheets.

My brain immediately told me i couldn’t clean the whole house today and i had a wave of tiredness wash over me in confirmation. So i stayed lying down and meditated on the problem. All my life I’ve had to lie awake in bed each morning and think about the day behind me then the day before me and then i could get up. Doing this put everything in perspective and i could then forget about it. Id plan my day ahead and up id get. It wasn’t until i started taking  Dosulepin, 25mgs 2 hours before i wanted to sleep, a month ago and had my second sound, restful nights sleep in years that i realised i couldn’t remember the last time id done it.

The first great nights sleep was about 4 months ago when id spent most of the day shopping and lunching with Jon. It was a really relaxed day with no stress, no undercurrent caused by my tiredness, and i bought myself a new pillow (thinking it was my pillows keeping me awake!?!). In hindsight i can see that i slept well that night  because 1) i expected to, 2) id stayed relaxed all day and hadn’t gone into adrenaline overdrive, 3) I had a placebo pillow. Hindsight is a wonderful thing and id say the majority reason was 2). This taught me a lesson but i only really understood it properly whilst i was meditating this morning. I need to stay relaxed and calm and do everything possible to keep adrenaline levels down. Which means that its better to do things in small bite size chunks (rather than eat everything in sight and be too stuffed to move for days).

So, im testing myself today and until i have seen my O.T. I have a new management plan – 1 day at a time, 1 task at a time, 1 stage of task at a time. My plan is to ONLY clean my bedroom and to do it in stages. The first stage is to change the sheets so that if i do feel exhausted after that at least i have a nice clean bed to get back into – ahhhhh blissssss……..

Later …………. hmmmm ………….. well i faltered at the first stage. I went downstairs to get sheets from the airing cupboard and as i passed the hoover on the way up i decided it would be energy saving to carry it upstairs now instead of making two journeys. Id already been down to the kitchen to get polish and a duster so that was down two flights to the kitchen, back up to the bathroom and then up again to my room with the hoover and an armful of sheets, duster and polish. New lesson learnt – its better to slowly carry up one thing at a time than exhaust your body by using core muscles heaving what would probably be too much for a body builder!! So im resting and writing but actually need to lie in my newly made bed and just rest for a while. Yes, yes i know! I made the bed when already feeling the strain from the heaving so my morning hasn’t gone exactly to plan but i have learnt something and im now going to eat one of the apples i also brought up with me and read for a bit. Because of course my other plan was to have a bath and wash my hair if all went well with the bedroom plan and if i dont rest im not going to be able to do that without making myself ill again.

Ok … so its now 15:30 and ive read a bit, talked on the phone a bit and then decided to make a stew for my Jakeys tea coz hes away on a school trip til about 8.30 and will be starving when he gets home. Ive just realised that i cant use a potato pealer any more because it takes too much energy to hold the veg and pull the peeler over the skin – i think its because you have to hold on really hard to keep both things in your hands. I can only do it with a knife, which takes 10 times longer but uses so much less energy. I now ache all over and my glands are up 🙁

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Paying for it day 2!

On March 22, 2011, in M.E. diary, by Sally

I slept quite well last night for the first time in about a week but I cant concentrate on anything today. Have got my laptop in bed but ive spent 4 hours looking at an email and staring at a spreadsheet i was supposed to be updating. Have just taken some very good advice from Jon via a phone call on Skype ……. ‘dont do it today’. This is obviously paraphrased because there is no way my brain can hold any info today but the gist was definitely dont do it so ive stuck it in drafts.

Jake away tonight so have managed to make my own tea. Took me an hour to plan it from my bed but i figured that if i grilled some salmon by the time it was cooked id have a salad made and could be off my feet in about 8 minutes – managed to get the energy for that but am concerned that im still using adrenaline to get by until i see Michelle (my Occupational Therapist) on the 30th of March! Bit annoyed because i left my flask upstairs and didnt have the energy to go back up 2 flights of stairs to get it so necessity being the mother of invention i took the kettle and 2 teabags up with me and refilled it upstairs. Feeling embarrassed that im so pathetic today and glad that no one is here to see it.

Just realised that if Jon had been here i wouldnt have touched the garden because i wouldnt have considered it ok to feel like this while he was around. Havent worked out if this is a good thing or a bad thing yet.

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