A Little Progress

My last post was a bit bleak and showed a lot of my frustrations for my situation. Thankfully things have slightly improved since then, which in relative terms is a big improvement. The regression of my health due to moving was really weighing on me and sending me down the dark path mentally. I was lost at to what to do, but had one thought that was founded in desperate times calling for desperate measures.

Towards the end of August I decided to try some things to help my health as napping twice a day and full night sleep and yet still feeling ill and exhausted was breaking me.

I decided to test my non-eating thing I did in hospital as it’s the only time in the last 7 years I really have felt like I had energy and focus.

I didn’t eat for 24 hours but drank plenty, and I felt so much better in mind and body. The difference was quite incredible. Since then I’ve skipped breakfast and not needed my midday nap. I still need my afternoon one and a full 9-10 hours at night, but there is something here that I do feel needs further investigation.

I stated in the previous post that I have been seeing the CFS specialist in Bristol. She agreed to take my case on but in letter to me and my doctor, stated that I still don’t completely fall into the bracket of what they deal with. I’m happy to be with them and we’re focusing on pacing and sleep related things for now. Comments from the specialist in a letter to myself and the doctor suggested that further investigation might be useful. However, after trying to stick with the doctors I was previously with, instead of changing because I’ve moved, they decided not to keep me on so I had to change, even though it would have helped so much to keep a doctor that knew the circumstance. I’m yet to make an appointment and pluck up the confidence in them that they might actually be supportive. I’m really going to try hard to do it this coming week.

Another thing that has really helped is that I take sleeping tablets to help recover when over exerting myself. This is more effective than my one hour nap in the afternoon. I will usually take it about 1pm and be asleep for three hours. This helps me get a quick fix when beyond exhausted and ill. Although, I have become a bit too reliant on them as after a two week break at family I over spent on energy and have on average used my extreme nap about every three days instead of once a week as intended.

The two main theories with this seem to be either some allergy situation or something relating to blood-flow i.e my stomach and brain do not get enough blood and therefore nutrients, oxygen etc. Both these theories could explain why I have stomach issues, brain fog, fatigue and why over the years things have been slowly getting worse.

They are just theories, but it’s nice to have a little focus back from the not eating in the mornings. I still get tired very quickly and it takes ages to recover from spending energy, but to have some back is refreshing. The only issue is once again I’m not balanced and now I have this new energy I straight away want to use it to ‘achieve’ and do things when actually I should be resting and pacing it as the specialist is trying to teach me. I’m a very slow learner though.

One other thing that I should mention is the curious restricted feeling/ache in my chest on the lower left side of my heart. I started to have it every so often about six months ago, but its frequency and intensity has increased over time and I feel it more when I do push my energy levels. It’s one that I need to bring up with the Dr.