Chronic Illness and Boredom - any tips please?

VfM4meplse

I agree with a lot of the advice here; Mr_Toad and Bubbllegum's posts I think is spot on although I'm sorry they have had to suffer so much.

OP, you may feel physically limited and lack concentration, but its important that you don't let your mood slip. Please stick on the radio and listen to your favourite genre of music, current affairs, whatever but make sure you get interested in something and not bored. (Given half a chancee, I could easily listen to the BBC World Service all day but appreciate its not everyone's cup of tea). Also, have you tried any relaxation techniques? There are plenty on Youtube, give them a go and you might find you feel functional for more of the time.

Anoneemoose

VfM4meplse wrote: »

I agree with a lot of the advice here; Mr_Toad and Bubbllegum's posts I think is spot on although I'm sorry they have had to suffer so much.

OP, you may feel physically limited and lack concentration, but its important that you don't let your mood slip. Please stick on the radio and listen to your favourite genre of music, current affairs, whatever but make sure you get interested in something and not bored. (Given half a chancee, I could easily listen to the BBC World Service all day but appreciate its not everyone's cup of tea). Also, have you tried any relaxation techniques? There are plenty on Youtube, give them a go and you might find you feel functional for more of the time.

Thank you.

I do try to keep my mood up, most definitely! I have a couple of apps on my phone which are like deep relaxation ones, so when I know I am going to have to nap, I put one of those on, to help make it a 'decent' one!

I also listen to Absolute 80's a lot, which I love! It takes me back to my childhood and brings up fab memories. Don't get me wrong, there are days when I can potter with bits and pieces, but more frequently, I am too tired to do anything meaningful. At least when I am armed with my list, I know I can do some things in bite size chunks.

And you're right, it is awful that people have to suffer in different ways, just to get through the day...I do wish I had a magic wand sometimes.

VfM4meplse

Anoneemoose wrote: »

Thank you.

I do try to keep my mood up, most definitely! I have a couple of apps on my phone which are like deep relaxation ones, so when I know I am going to have to nap, I put one of those on, to help make it a 'decent' one!

I also listen to Absolute 80's a lot, which I love! It takes me back to my childhood and brings up fab memories. Don't get me wrong, there are days when I can potter with bits and pieces, but more frequently, I am too tired to do anything meaningful. At least when I am armed with my list, I know I can do some things in bite size chunks.

I am really pleased to hear it, I wish more people were able to take such a positive view!

Don't forget that you can self-refer into your local IAPT service should you ever wish to, as a chronic disease sufferer, it can be useful to do this proactively to broaden your "toolkit" rather than wait until something knocks you off your perch.

Absolute 80s = Absolute Joy The one that always perks me up.

Anoneemoose

VfM4meplse wrote: »

I am really pleased to hear it, I wish more people were able to take such a positive view!

Don't forget that you can self-refer into your local IAPT service should you ever wish to, as a chronic disease sufferer, it can be useful to do this proactively to broaden your "toolkit" rather than wait until something knocks you off your perch.

Absolute 80s = Absolute Joy The one that always perks me up.

Oh wow! Yep, that is fab. I love it all. I don't know if you watched the series Life on Mars and Ashes to Ashes a few years ago, but they were fab...it really was like going back in time! I actually went to see Wet Wet Wet on Friday and REALLY suffered over the weekend - my hands and arms and shoulders were absolute agony because of clapping and my body felt like it had been stamped on - but do you know what? It was worth it. I had looked forward to it for ages, I prepared myself beforehand by literally being sofa bound for the days running up to it. I took painkillers before I went and I actually felt 'normal' for a few hours.

And I do have details of the mental health services, but thank you for the reminder. I currently take anti anxiety meds for a form of OCD. These have it under control well though, so I find I can manage things well with that in general. I do have up and down days mood wise, but they are generally stable and the meds actually help me feel 'normal' in that way too..as in everybody has up and down days and my down days aren't too bad. I am acutely aware of how this could change though, and that is why I wanted suggestions of how to keep myself occupied. I am thoroughly amazed by the helpful suggestions on here and look forward to getting started! I have had my daughter off poorly today though, so we had a sneaky duvet day, which was lovely!

System

KxMx wrote: »

I spend alot of time watching TV. This is not vegging out in front of daytime telly, but following shows and documentaries that interest me. I watch near 100% on catch up through Now TV.

I watch a lot of documentaries too in my spare time, there's a website called http://watchdocumentary.org/ that has lots of interesting and free docs you can watch

Mr_Toad

Bubblesmum wrote: »

Mr Toad - have you considered using a "lightbox" I have found this very helpful, when sunlight is not great, its one of my copying strategies.

Thank you for the suggestion but it wouldn't help.

Myasthenia is an autoimmune disease. My own immune system is attacking me, it detects the chemical signals in the brain that move the muscles as something it needs to attack so it tries to block those signals. My immune system is so good that even though I'm on immuno-suppressants that keep it barely ticking over I haven't had a single cold, snivel, sore throat or infection since I've been taking them.

This means that as muscles move the immune system prevents it and things get harder to do and eventually impossible.

My latest bad patch means I can't chew food, after one or two mouthfuls my mouth stops responding. I also slur my speech if I speak for more than a few minutes.

The big problem is that the more you fight it the harder the immune system fights back and if it starts to affect the breathing muscles it's good night Vienna! :eek:

I know this because I there have been times when I kept going and all of a sudden I was having breathing difficulties. Standing there not able to get air is frightening. It's not like an asthma attack, it's completely silent, you open your mouth and try and suck but the muscles don't work so no sound. There have been three such occasions where I have wondered if this is the end. :A

Fortunately my lungs started working again before it was too late. I now never ignore the signs.

When in remission I take my immuno-suppresants and another tablet every two hours and am perfectly healthy. And every day I wake up and my first thought is Yay, not dead yet. :cool:

GlasweJen

Hi Mr Toad, I'm myasthenic as well. I have the MuSK+ version so conventional tablets don't work. Have you ever had IVIG? I had a course of 3 days treatment and it lasted me a few weeks but it kind of gave me a boost as even when the treatment wore off I never went as bad as I was before they started it.

Mr_Toad

GlasweJen wrote: »

Hi Mr Toad, I'm myasthenic as well. I have the MuSK+ version so conventional tablets don't work. Have you ever had IVIG? I had a course of 3 days treatment and it lasted me a few weeks but it kind of gave me a boost as even when the treatment wore off I never went as bad as I was before they started it.

No, not yet. So far my symptoms are fairly localised, chewing and speaking. For the most part the Mestinon works but last year I had a bad spell and they put me on the immuno-suppresants and steroids to stabilise me. As soon as I settled down I was off the steroids and was absolutely fine up until Xmas when the chewing problem returned.

I'm back on the steroids again but am improving. The neuro consultant is baffled, he's never seen a case like mine where I can sit and stand without pulling myself up with my arms, walk for miles without getting tired or out of breath but can't manage bite through a slice of toast!

He's just referred me to another specialist in Myasthenia, I think they plan to use me for medical experimentation. :rotfl:

To be honest I think I'm lucky in that some sufferers have it a lot worse than I do.

Have you had the electrodes in the brain?

I was sent to see some prof at Queens Med in Nottingham who wired me up to a laptop. They put a probe, like a acupuncture needle, in your neck then with the other, longer probe they go in through the eye socket, avoiding the eyeball and poke about in your brain then pass a current through it and depending where the probe is different muscles react to the stimulation and they measure how quickly the response slows as a result of the immune system blocking the signals.

It sounds horrific but it's painless and I found it fascinating.

I think he was a little disconcerted when I asked him if we had a keyboard did he think he could get me to play chopsticks.

Fosterdog

It may have been mentioned already as I haven't read every response but Coursera is a good site for keeping the mind ticking over.

There are varying levels of courses all free, there is no pressure to complete them so if you find one too difficult or not as enjoyable as you thought it would be you just don't complete it.

I have completed several short courses on there, got bored and quite a few more and my life got too busy while I was doing one so I failed after missing a few deadlines but it will be available again in a few months so I can retake it if my schedule allows for it.

Some courses have a weekly syllabus and test others are a complete at your leisure course with no time constraints.

It would be easy to pick up when you have a good day/week/month and drop out again when you get worse.

GlasweJen

Mr_Toad wrote: »

No, not yet. So far my symptoms are fairly localised, chewing and speaking. For the most part the Mestinon works but last year I had a bad spell and they put me on the immuno-suppresants and steroids to stabilise me. As soon as I settled down I was off the steroids and was absolutely fine up until Xmas when the chewing problem returned.

I'm back on the steroids again but am improving. The neuro consultant is baffled, he's never seen a case like mine where I can sit and stand without pulling myself up with my arms, walk for miles without getting tired or out of breath but can't manage bite through a slice of toast!

He's just referred me to another specialist in Myasthenia, I think they plan to use me for medical experimentation. :rotfl:

To be honest I think I'm lucky in that some sufferers have it a lot worse than I do.

Have you had the electrodes in the brain?

I was sent to see some prof at Queens Med in Nottingham who wired me up to a laptop. They put a probe, like a acupuncture needle, in your neck then with the other, longer probe they go in through the eye socket, avoiding the eyeball and poke about in your brain then pass a current through it and depending where the probe is different muscles react to the stimulation and they measure how quickly the response slows as a result of the immune system blocking the signals.

It sounds horrific but it's painless and I found it fascinating.

I think he was a little disconcerted when I asked him if we had a keyboard did he think he could get me to play chopsticks.

Unfortunately that procedure isn't safe for pacemaker patients so I can't have it but I have head about it, no idea how it would work in real life though.

I did have the EMG test to see if they could force my ptosis out, that was horrific and then they lost the results so I had to go through it again!