Today is moving day. Moving to (hopefully) a much quieter place to live, and into a house rather than a flat!

Spent the last 3 days doing the final packing and taking down furniture. Tried not to do too much heavy lifting and pace my way through it. Weirdly, last night, even though I was yawning I had so much energy I didn’t want to go to sleep. Adrenadline/stress I guess. Needless to say, I didn’t sleep well last night. My legs are aching so badly, nothing brings relief.

As for the move itself, I’m not doing any. Removal men are doing all the hard work while I’m at work. I’m still a bit anxious about it going smoothly but its all out of my hands right now.

Speaking of work, today is my first day back full time after my period of sick leave and a phased return to work. Possibly not the best day to be full time given my lack if sleep (only 1 and a half hours of restful deep sleep, thank you Fitbit for measuring my sleep!). Will have to see how it goes.

The new house should shorten my commute (and be cheaper!). As my biggest struggle is being unable to pace and rest at work, I’m hoping to trial a new working pattern where I work in the office in the morning, head home at lunch to rest and eat etc., and then work from home in the afternoon/evening. Haven’t asked my boss yet though so this may not survive first contact! I’ll still have days or weeks where things will be a struggle and I’ll end up losing my lie ins in the morning (which I think will be a good thing for a bit of sleep structure tbh), but hopefully with the rest at lunch the bad weeks won’t be so bad. That’s the plan anyway.

So I am on the last few days of my sick note now and have another chat with my Dr booked for Wednesday about what to do next.

Results of my baselining have veen mixed really. I didn’t write as much down as I was planning but often the effects have been far from subtle. I tried to get out of the house most days to run the odd errand or attend appointments. Especially as the heatwave has created some beutiful weather, its a shame to spend all that time inside.

So, a 2 minute walk to the local co-op, minimal impact. A 4 minute walk to the local laundromat, also minimal impact. So far so good. A 3 hour trip into town for an appointment completely floored me and I went straight to bed after I got home. But a 6ish hour day running errands and visiting a friend, while completely exhausted me by the time I got home, didn’t put me in a place where I had to go straight to bed and I was able to cook dinner (with help) and spend the evening relaxing.

Yesterday, I struggled with the weekly grocery shop, and again, it was straight to bed after. Woke up an hour or so later and dragged myself out to have a BBQ with my other half. Actually had a really lovely evening, and after eating, found myself feeling much better fatigue wise. That nap worked a treat. But today? Not doing great. Feeling very low, very fatigued and all round not in the mood to do anything. Alas, I have another appointment to make so lets see how this goes!

I don’t know what to do about work. I have some frustratingly big decisions to make, and they’re not easy. I think I’m resigned to the fact I can’t work full time if there’s an element of commute involved. Working part time will mean I can kiss away all dreams of getting out having to rent my home in the near future.

Positive affirmations.

We discussed giving ourselves positive affirmations in the first session of my new CFS/ME course yesterday. I think its a good principle and something I am definitely going to adopt.

But I struggle with having to congratulate myself for doing things I used to be able to do without thinking. Like ‘well done you got out of bed today!’ ‘Well done, you showered!’ Its so demeaning. Most people do that without thinking. And worst of all, if that’s all I do in a day I’m still supposed to congratulate myself but I don’t feel like I’ve achieved anything. Getting up and showering isn’t an achievement, it’s ‘business as usual’. Its going to be so hard to change that. Its steps backwards to make gains going forwards and that has never set right with me. I am feeling pretty low because I feel like my life has completely stalled. I’m not making any progress to achieving my goals and this is yet another set back.

But in other news, I got a Doctor’s note and I’m off work for a few weeks. My plan is to note everything I do and see how it affects me and to build my day back up from there. I don’t know if it’ll work but at least I’m trying something. Mind, its day one, I’ve taken it easy and my god am I bored already!

I was a speaking to a colleague the other day, after he told me off for not blogging much, about how I am struggling to blog. At the moment all I can really blog about is ‘I did this thing and it made me tired’ and I don’t do many exciting things! But he said he finds it interesting to know what is or isn’t affecting my CFS/M.E.

So what makes me tired and what makes me fatigued? Well there’s no rhyme or reason to it. What fatigues me one day might not affect me the next day and vice versa. But some things I have done of late that has had an effect:

• Driving

I don’t own a car at the moment so this was a real one off for me. My partner and I rented a car for the weekend so we could drive to Dorset for a family wedding. I’ve driven the route hundreds of times before so that side of it wasn’t too taxing but the concentration required for driving generally and for driving a new car, really took its toll. That said, I bounced back quickly. The drive down was about 3 hours (with a few errand stops on the way), but after a night of rest I was able to drive my partner and I on a little trip to Corfe Castle and of course attend the wedding party in the evening, with a rest period in between.

• Dancing

Well this, to be fair, was probably a combination of the day trip before, driving and the late night, but the day after the wedding was a struggle. Luckily we had predicted this and my partner was all set to drive us back home and looked after me while I was a zombie all evening.

• Ironing

Yup. Bank holiday weekend, already had had one day of rest and light activity but apparently ironing 6 or 7 items of clothing sent me straight back to bed. Woke up, did another light activity and promptly fell asleep in the chair. That was not a good day.

• Hormones

As mentioned in my last blog, I am noticing dramatic changes to my fatigue based on my cycle. It’s beginning to really get on my nerves if I’m honest!

Things that haven’t recently made me fatigued:

• Day out in Cardiff

This has really surprised me and I was expecting Post Exertional Malaise at any moment but it really didn’t impact me all that much in the grand scheme of things. This was the day after the ironing crash as well, which is even more surprising. But the trip involved travel, socialising, alcohol and a fair amount of walking – all things that by rights should have knocked me for six. (And for reference, it was an awesome day out)

• Piano

Bought my old keyboard back with us in the rented car so thought I’d have a go at playing for the first time in god knows how many years. Played for an hour, mastered one of the pieces I remembered learning. Biggest impact I had from that was a sore thumb!

Things that can be very hit and miss:

• Work

I’ve blogged at length my dilemmas over my working hours but general rule of thumb is – a day in the office = heavy fatigue, a day working from home = mild tiredness, but more often than not my body likes to break this rule.

• Housework

Again, so hit and miss. Last week I had such a great housework week. This week, well, I’m too exhausted to even think about it at the moment, but I know if I remotely attempt to do something I’ll regret it in the morning.

I think also I’m understanding when I’m ‘tired’ and when I’m ‘fatigued’ at bit more now. For example after the ironing mentioned above I felt tired. When I woke up I was no longer tired but I was fatigued. Does that make sense?

So I apologise for not blogging much if late. To be honest there’s not been much worth blogging about going on in my life!

Last week was ME awareness week and reading the stories of how people have been affected by this was heartbreaking. I am so lucky I can work and leave the house and enjoy small parts of my life still. I don’t ever want to get worse. However the smallest change to my body does knock me for six. I’m female so even my time of the month has had me sleeping for 14 hours or so in a day for the last few months. I am concerned any serious illness might be a breaking point.

I guess I’m still just struggling with it all. I’m back to working full time. Well trying to work more than my set hours to build my flexi up. Problem is, for every good week I have where I can build it back, it’s followed by a bad week where I undo some of the time I gain.

I still don’t know what to do with my work situation. The 5 hour a day trial worked really well and I felt like I could gain a bit of my life back on that schedule. This was helped by a new housework rota my partner and I started which was a huge stress relief. More on that later. Problem is, I just can’t afford to live working 25 hours a week. I might get my life back but I’d have no money to use to help me enjoy it! I could just about do a 6 hour day and feel okay, and that is about affordable but I think at times even 6 hours is too much. And of course because I live with my partner, I’m not eligible for any benefits to top up my earnings at 25 hours a week. Typical.

So this back and forth in my head is getting me down. And the housework rota? Well that started off well but soon we fell behind. We’re both tired and I’m still weighed under by having to micromanage it and also the guilt of asking him to do his chores on days I don’t feel up to doing mine. I can’t relax and do my hobbies etc. with the knowledge in the back of kind of all the tasks that need to be done around the flat. So that’s getting me down too.

And finally, I’m gutted to be missing oit on all this beautiful weather! I hate living in a flat. I’d lose a whole day by walking to the nearest park and spending an hour or so there. Wish I had a garden at the very least so I could meditate outside. I did that at my Mum’s house over Easter and it was so calming.

As for my treatment, well I caught up with my CFS Dr a few weeks back. She’s happy with the things I am trying though I do feel guilty I’m not trying enough. She’s booked me on a new course which will look at support and pacing etc. in more detail. That doesn’t start until June though because I’d rather attend it at a hospital closer to me than travel across the city. I think after the course then I think that’s it in terms of seeing the specialist. She’s giving me all the advice and tools I need and then it’ll be up to me to find out what works best and manage it from there. No magic pill, no tried and tested treatment that Drs can support you through because this illness effects everyone so differently.

One can always find energy for kittens!

Now I’m feeling more recovered from my trip to Rome, I spent yesterday afternoon in Cardiff, doing some long overdue catch ups with friends, one of which is currently looking after three adorable kittens and their mum. Look how cute they are!

It was just the most calming thing ever and they were just so adorable, I didn’t want to leave them.

But left them I did and made my way to the pub for dinner and a few cheeky glasses of wine with another friend. I was absolutely shattered by the time I got home (about 10pm, so not that late) but today I’ve not felt as tired as I thought I would and after a lie in and a slow morning I’ve managed to make some Easter treats and do some small housework tasks.

My energy level success this weekend I think has been down to a little trial I’ve been running with my boss, where I am trying out different working patterns. Some elements of it has been great and has dramatically reduced some areas of stress and has helped me have energy in the evenings and weekends, but some elements have still left me struggling with fatigue and concentration. I have a few ideas of other things to try because ultimately I don’t want to have to reduce my hours at work, firstly because of the financial strain it will put on me and secondly because I don’t want to reduce my workload.

Trying something new this week so will see how that goes, and of course looking forward to the four day week and four day weekend for Easter.

Today I felt normal for a while. I don’t know why but it was refreshing to say the least! And by normal, I mean I felt awake and energised, even to the point where my eyes didn’t feel their usual heavy/tiredness. What was also surprising was that it came after I had such a long and draining day yesterday. Maybe I slept well last night because of it. But of course it didn’t last for long and the fatigue soon came back around lunchtime. Things at got a little…shall we say, fustrating at work, and I could just feel it getting to me so I called it quits and only worked a short day. Which I am pleased for because right now I am exhausted, and its only 9pm!

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Been really struggling with helping my closest people to understand my illness. Its a common problem with all invisible illnesses but it doesn’t help that I can’t really explain it.

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