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Wednesday, 28 October 2015



Foggy and Patch are in Patch's bed snoozing so while I have some peace and quiet I am commandeering Foggy's blog.

Today I am going explain how important having a routine is to a M.E. sufferer. I can't remember if I was taught this as part of PACING therapy or Cognitive Behavioural Therapy, but it was a tip given to me by a counsellor at the start of my life as a M.E. sufferer.

This subject is particularly appropriate at the moment because, since I left my old job to become self-employed my routine has gone out of the window! 3 days after I left my job, building work started in our house. Furniture is out of place, there is constant noise and time schedules are run by builders instead of us. All of these factors have left me feeling extremely tired and disconnected with everything.

My counsellor told me that I needed routine so that my body 'learns' when energy is needed. So, since 2008 my sleep routine is as follows: I go to sleep between 10-10.30 pm and set my alarm for 6.45 am. It has to be the same every day, even during weekends or holidays. Otherwise, my body doesn't know whether it is coming or going. Even if I don't feel sleepy I force myself to go to bed. Otherwise, I will have repercussions to deal with the following day. Symptoms will worsen and I will feel exceptionally tired and unwell. Usually, my eyelids are well on their way to be closed by 10.15 pm anyway! It is not easy for me to explain how it feels when your body is shutting down. As bedtime gets closer, I am unable to hold my head up and my insides feel like they are non-existent.

As part of my daily routine, I usually try to avoid napping in the afternoon no matter how tired I am. However, there are days when napping is unavoidable. Getting horizontal and sleeping is sometimes the only way to feel human - although it doesn't make me feel 'well'. If sufferers nap regularly the body gets used to napping in the afternoon and starts to tune into 'rest/nap' mode, whether your body needs to recharge or not. Since becoming self-employed, my body has felt like shutting down by 2 pm every day. I know this is because of the noisy and disruptive building works. I can't wait for life to get back into a routine!


Sally x

Friday, 2 October 2015

Billy no mates


Foggy is snuggling up with Patch and is oblivious to the fact that I am writing another blog!

It's 18.20 on Friday night and I am in my thermal pj's (sorry...M&S lounge suit) covered by a double layer of snuggly duvet while I type this blog. I am feeling a little bit sorry for myself, I'll admit it. I dislike this time of the week immensely, it reminds me of what my life used to be like and how different it is now.

Friday nights seven years ago involved clubbing every Friday and Saturday night. Dancing and singing until 3am and then walking home with friends. Spending all day Sunday recovering from a hangover and then back to work on Monday, refreshed and ready to go. I was known as a bit of a party girl and liked a drink. Oh, how things have changed. Let me stress...I don't miss the hangovers! But, I love socialising and I really really love dancing and mucking about on the dancefloor. The last time I went clubbing, or just out dancing, was at New Year. I was home by 11pm and in bed by 11.15pm. The following day I uploaded photos on Facebook of my friends and I
having a whale of a time dressed as superheroes...it was fun but wore me out completely; I couldn't even enjoy the climax at midnight. Yet again, I had, guiltily, said to my friends that I needed to get horizontal and was desperate to go home. I hate having to say that. I hate admitting weakness.

So now I avoid going out. Purely because I know by the time I have made the effort in making myself look half decent, got to the venue and chatted for half an hour, I will be wiped. So then I have to disappoint friends AGAIN. They say they completely understand and I love them to bits for being so lovely when I repeatedly let them down, but it doesn't stop me from beating myself up inside. I am, in one sense, lucky that most of my friends don't live here. I don't feel the pressure to go out every weekend. My social life would be non-existent even if I was healthy. So, at least I am not missing out TOO much.

Last weekend was a disappointment. My fabulous friend Yvonne came down to the South Coast specifically to meet up to watch the England v Wales match. I see Yvonne 5-6 times a year and so we like to 'do stuff' when we meet up. Southsea Castle is screening the whole of the World Cup so we headed down there to stand with hundreds of other supporters. The key word in that sentence is STAND. After 30 minutes of play, my core muscles felt non-existent and I started to feel a bit lightheaded. there was limited seating and my own embarrassment/pride/awareness of disbelief stopped me from asking if I could sit due to my disability. I wasn't in the mood for disbelieving glances. So I stood until half time and then went and perched on a cannon. By this point I had reached a point where I couldn't deny that I felt numb inside and needed to go home. Yvonne is an absolute star and said that she had come to see me, and if that meant sitting in my living room watching the rugby instead, then so be it. As usual, I wouldn't stop apologising for ruining our evening; as usual she told me to be quiet. I was wiped out for two days after that evening. I can't even say it was worth it. Even if I was surrounded by lovely rugby people, some of whom were absolutely stunning! ;)  (rugby men watching is one of my favourite pastimes!).

I think the biggest problem with me is that I don't like letting people down. In my mind, having to end social evenings prematurely is being a let down. This view doesn't come from my friends it comes from me. Maybe I should just stop putting so much pressure on myself to be 'Social Sal' from 2007. She is long gone.


Sally xxx