Improving or worsening?

[Alexandra90]

I have been sick for almost 15 months.

The past 6 months my crashes has changed. Before they were maybe a bit more mild but lasted much longer (1-3 weeks). Well, mild is maybe the wrong word, but let's say less severe. Now it seems the crash are more intense, BUT pass much faster (sometimes I can be "functional" again in after just 1-2 days). I also seem to be have less frequent crashes. I have not, at least yet, gotten as bad as my first big crash which was more or less consistent for 2 months.

Some symptoms have become less severe, some has left to never return (yet), and some have changed. A few are new ones. I can do more now for an example, like cooking and cleaning, but at the same time I'm more sensitive to vision overload so I can't watch tv for longer periods of time. Before this was strangely not an issue at all even though I had more severe brain fog. I can also read more now even in bad days.

I'm asking because it's hard to grasp and understand this disease and what's good and bad for my body..

 

[maccas dad]

Hi, I think you have described my current phase of this illness exactly. Like you I am not sure what the long term outcome will be but I feel that it can only be positive. Less symptoms, quicker recoveries from crashes must be a good sign.

There are still things that I cannot beat yet, in particular, walking. This will be my next goal to increase distances without crashing. I do hope it is a genuine step forward for you and not something to do with the better weather as some have suggested on these forums. Having said all that I am now sitting on my bed trying to aid a speedy recovery after attempting to do a bit of diy in the house.

 

[eric_gladiator]

@Alexandra90

Have you tried taking a supplement or something? Are you able to sleep a certain number of hours? I think those two things help a lot, I encourage!

 

[Dechi]

I never could make any sense of my crashes. Severity, length, cause, they often differ without apparent reason. It's one big mystery to me, and I've tried very hard.

 

[Alexandra90]

@Alexandra90

Have you tried taking a supplement or something? Are you able to sleep a certain number of hours? I think those two things help a lot, I encourage!

I've tried many supplements but without any success unfortunately. A week ago I started supplementing Lithium Orotate (not the medicine) though which seems to work on my mood. Time will tell!

Yesterday I had a crash but today I feel much better. Strange!

My sleep are changing constantly but it's weird because sometimes I get better even though I sleep horribly.

 

[Alexandra90]

Hi, I think you have described my current phase of this illness exactly. Like you I am not sure what the long term outcome will be but I feel that it can only be positive. Less symptoms, quicker recoveries from crashes must be a good sign.

There are still things that I cannot beat yet, in particular, walking. This will be my next goal to increase distances without crashing. I do hope it is a genuine step forward for you and not something to do with the better weather as some have suggested on these forums. Having said all that I am now sitting on my bed trying to aid a speedy recovery after attempting to do a bit of diy in the house.

Thank you for sharing your thoughts

I hope so too! Maybe with time we can actually improve. Fingers crossed. How long have you been ill for?

 

[Alvin2]

We all present a little differently, i only skimmed your first post (brain is online but unable to process much right now) but mine has also changed over the years quite a bit in weird ways

 

[maccas dad]

Thank you for sharing your thoughts

I hope so too! Maybe with time we can actually improve. Fingers crossed. How long have you been ill for?

Difficult to say really. I believe most of my life, now 64 but had a major crash 6 years ago which has led to me being in my current situation.

 

[PatJ]

My sleep are changing constantly but it's weird because sometimes I get better even though I sleep horribly.

Some people find that they feel better with less sleep for a few days, but then lack of sleep catches up and they feel worse. Sometimes I can get only four hours of sleep and feel better than if I had slept longer. I usually need nine hours of sleep at night.

This is an illness of strange reactions and changes. I have improved mentally over the past few years due to supplements (especially LDN), but have declined physically. It's possible to improve in one area but decline in another, sometimes on a daily basis.

 

[eric_gladiator]

I think you have not found something that can help you. My biggest advice is that you rest, you feel comfortable ..