Hi whoever is reading this, it’s been a while. How have you been? A lot has changed recently for me, I’m actually now able to work full-time. It’s a hard job too, photocopier engineer. Lots of driving, lots of delivering toner, lots of carrying photocopiers up and down stairs. My band’s back together and we now have a monthly slot at a venue near us, we’re still looking at getting more gigs and we’ve really widened the range of music that we play which is a great thing in my eyes. Still with my incredible girlfriend, in fact, it’s just been over 5 years and I wouldn’t be where I am today witho ..read more

That is a question I’ve been asking myself for as long as I can remember. When I first got ill I was questioning whether I truly was ill or if I was just being lazy. I mean, when it first started I assumed I was just out of shape and tired because I went from barely working 10 hours a week to doing 50+ at the drop of a hat. But then as time went on and I kept calling in sick because I physically couldn’t get out of bed to be greeted by ‘you know you’ve used that excuse before, right?’, well, they were right. I had used it before, a lot, I just didn’t know what else to say. Then the diagnosis c ..read more

I’m doing much better. I had honestly wondered if I would ever get back to how I felt before I got ill. I’m still not there, but I’m closer than I have been in the last 8 years. I am working two jobs, admittedly between the 2 of them I only did 100 hours this month. That’s not that impressive I know, but for the longest time 60 hours a month was the absolute maximum I could manage. I realised I’m actualy doing more work too. I’m averaging 6,000 steps a day, sometimes doing as many as 12,000 in my football centre job, compared to 3,000 in the past. Honestly, I think the tiredness and shortness ..read more

Since February 2013 I’ve had issues with my energy. ‘Issues’. More than issues. A good week would have me work a couple of 5 hour days on a day in a day off (at most) schedule and do nothing else outside of work. A 20-minute walk at a decent pace could have me in bed for 3 days. But finally, I found a doctor who was willing to listen. I feel like sharing my story, partly to rant, partly to push the importance of pushing for more investigation if you think something is wrong. Also, as I’ve seen many people pointing out, the importance of getting a doctor who listens and knowing the actual figur ..read more

I’ve been quiet for a while now, I’ve just not had the energy to write, let alone think of something to write about. I try to be helpful with the things I write, either with the ways I’m managing things or just sharing my experiences, lately, I’ve been struggling with both. I am struggling with day to day tasks either because of a lack of energy or because of pain. I want to be playing my bass right now but my arms hurt too much to hold it. My plan of going on short walks with my girlfriend has stalled because I just don’t have the energy for that. I had hoped levothyroxine would help me, it d ..read more

So, these last 3 weeks have been interesting.  Friday 15th January I booked a telephone appointment with my GP, it hit 6pm when they shut and I hadn’t had a call back so I kind of gave up hope. 7.30pm the doctor calls me.  Wednesday 20th Jan I had a round of blood tests done again. Friday 22nd Jan I get a call telling me to book another appointment because they want to talk about the test results. I wanted to talk to the same doctor because he was helpful and actually listened when I said I think we need to look at my thyroid again, he was off until Friday 29th Jan. I waited until th ..read more

It seems every year or two I decide I’ve had enough with being ill and force myself to go back to the doctors. It’s never led anywhere. They run the same few blood tests which all come back normal so they tell me to just look after myself. Well, this year, I had enough … again. I have been going through one prolonged crash for … I don’t know how long, but I don’t seem to be recovering. After a lot of questioning it, debating it with my wonderful girlfriend and my best friend, I decided I had to do it. I went online and requested an appointment. I might have got lucky with it. That was a Friday ..read more

Where to start with 2020? It’s been one hell of a year. It started off fine didn’t it? It was going to be our year. Then … Covid. I experienced so much frustration in the way it was handled. How the rules were (and still are) clear as mud. How pretty much every single business found ways for staff to work from home overnight when people with disabilities had been campaigning for that right for longer than I know. All the stress that I had from my work at one point technically being allowed but no one wanting to book so we wouldn’t get any financial help because we could work there just wasn’t ..read more

Merry Christmas, everyone. I hope you all had the best Christmas Day possible in this extremely weird year. My day wasn’t too bad. Social interaction does tire me though. I do often feel that it’s one of the glossed over effects of CFS. Even the introvert vs extrovert side of it gets glossed over. It’s always the introvert being told to go out of their comfort zone and be sociable, never the extrovert being told to tone it down. Social interactions always tired me, now doubly so. That’s the reason I’m doing this one today. Plus, I forgot to set it up to publish automatically yesterday. Anyway ..read more

It might sound odd hearing about someone with Chronic Fatigue Syndrome, or any chronic illness/disability, playing football, any sport actually, but I do try to play as often as possible. Which isn’t very often. Even less so with everything else in 2020! I love football, I really do. Playing it, talking about it with my friends, watching it. It’s always been one of my favourite pastimes. I even work at an indoor football centre. At school and sixth form I would play every chance I got. It quite often led to injuries and aches and pains, which I do contribute to some of the issues I have with m ..read more