A Health Update

It's been a while since I have told you guys in depth where I'm at health wise. The changing of seasons has been tough on me and the last few weeks I feel like I have gone backwards after I had made small progress during the summer. I'm spending most of the day in bed only getting up and about to do small tasks.

My memory is touch and go. I still forget names, and things that have happened but it's not as bad as it was - there was one point I barely knew where I was half the time. I'd say I'm more forgetful rather than completely clueless.

Insomnia is my biggest enemy right now. My body is so exhausted but as I am constantly running on adrenaline to get through the day when it's time to sleep I can't nod off which then becomes a viscous cycle. My sleeping pills don't help so I'm looking into alternative routes with that one...

I'm not fainting as much as I was which is great but I'm still having horrendous fits which have recently been on the rise again (They look like I'm having a stroke and an epileptic fit at the same time)

My pain medications mostly keep my pain levels under control but neuropathic (nerve) pain during the night can get extremely bad. I hate being dosed up to my eyes in pain meds but it's the only choice I have right now. The hallucinations I get as a side effect are not welcomed with enthusiasm either!

Paralysis is something that has been causing me a lot of stress. Loosing the use of my limbs is so very frightening.

Some good news - I haven't been sick in quite a long while! I'm tolerating food better although still loosing weight - NOT a good thing despite what people might think. Appetite is neither here nor there but I force it because I know how important food is especially as my body doesn't make new energy easily or conserve vital nutrients.

My 'brain fog' is also better and I can now concentrate better on the TV and have been reading more often, something I'm pleased about!

Comparing myself to how I was this time last year gives me a lot of hope and strength. This time last year I was on the verge of hospitalisation, unable to fed, change or wash without help. I can now do all of those things myself which is much better for everyone. This time last year I was in and out of A&E every other weekend, I haven't stopped breathing in a long time now and the last time I was in an ambulance was in June. The steps I have made are very small ones, but I'm so grateful for them and the biggest change of all is in my mind. I cope better. It's still very very tough to accept a life that isn't a life at all, but I just take it day by day.


I don't want to bore you too much with lots of health jargon so I'll leave it at that.
Small steps.

How have you guys been doing?

x Hayley-Eszti


28 comments

  1. I'm not sure why I can't just put my name in the comment box but I just want to say your are inspiring. I have the same horrible illness and I know how tough it can get. I read your blog regularly and you seem so strong. I hope you get some relief soon hunny, but know you are looked up to, and you are brave being so open. Bless you.
    Love Amanda

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    1. Yes the comment system isn't the greatest. Thank you for following and for this lovely comment! I'm sorry you have to deal with this too, lots of hugs and positive vibes for you x

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  2. It's good to hear that some things have improved, Hayley. May they continue to do so. Best wishes!

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  3. I'm so glad to hear that there is at least SOME improvement!! I admire your bravery--I'm not sure I could cope with all that, myself. Hang in there, Haley!!

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    1. There's no other choice sadly, but I will hang in there until the bitter end

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  4. Sorry to hear you are struggling so much Hayley. It reminds me of my relapse last year. You might have already tried these things but i found magnesium supplements good for pain and the epsom salts in the bath. Also melatonin supplements are reportedly good for addressing sleep or if you want to go down the pharmaceutical route then low dose amitryptiline is good for pain and sleep. I'm glad you can concentrate on the tv etc. now though, it at least makes the day a bit more interesting! Its great you have such a positive and optimistic attitude. I hope you continue to make progress x. Aly@perfectisamyth.blogspot.co.uk

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    1. Thanks for all of your advice Aly, I am doing all of what you have mentioned funnily enough apart from melatonin which I am currently looking into as I have heard it is good. I hope you too continue making progress. Lots of Love! xx

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  5. God, you don't have it easy, Hayley. Have you tried anti-depressants for sleep? I assume you have. I've used them a number of times over the years and they have helped my sleep fairly consistently. Either the SSRIs, which increase serotonin and can give an energy boost, or the older tryciclics can work - amitryptiline, prothiaden.... I know some people have a bad reaction to anti-depressants, and I have had that too, though I have found that if I start on a small enough dose - maybe a quarter of the recommended dose, and build up slowly, that I can avoid the worst side-effects. Anyway, good luck with it all.

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    1. I take amitriptyline 30mg which I have built up the dosage on over the months, but it really doesn't help me sleep. I was put on some anti D's which I can't remember the names of last year but they didn't seem to help and I remember feeling very down when I was on them due to the inbalance so I stopped taking them. I hope I can soon find something soon that helps anyway. Thanks for your advice and good luck to you too.

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  6. Small steps are still steps. Take care of yourself, I wish nothing but good things for you.

    /Avy

    http://mymotherfuckedmickjagger.blogspot.com

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  7. I am glad to read about the improvements - we take every little improvement we can get!!

    Have you tried alpha lipoic acid for nerve pain? I take it for the trigeminal neuralgia and there were studies in using it to help people who had neuropathy... if you decide to try it, just check for any contraindications with meds you take before you get some. You can order it online from Nature's Best.

    Also, I keep meaning to ask you (and forgetting, and then I wonder if I have already asked you) have you been tested for POTS (postural orthostatic tachycardia) and associated autonomic nervous system dysfunction... it seems like a lot of M.E. people have some element of this... fainting can be part of it... I fainted down a small flight of stairs (on the boat) recently and really hurt myself :( blah! You can find more information on the autonomic dysfunction on Dinet forum.

    I'm with you on the insomnia. Mine gets worse and then better and then worse... I don't think the change of seaons or the clock's changing helps either. I do find making sure I don't use anything bright like computers/tablets/phones after 8 or 9 pm helps a bit... as I guess the bright light overstimulates me. I am okay with the TV though.

    Losing weight for a slim sick person is not good... can you tolerate any kind of meal replacement drink... as if you can, you could perhaps add that on top of what you are already eating (like a snack) and it might help you to maintain rather than lose.

    xx

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  8. Hello, my friend, I can tell that something is going better for you since when I first started reading your blog. As always when I read your posts, I get both so angry that you have to go through all this, and also so inspired by your courage.

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    1. Thank you Inger, you are right things have improved, a long way to go still but I have to stay positive that things will only continue improving, thanks you as always for your kind words

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  9. Hello Hayley-Eszti. I am sure you know and have been encouraged to hold on to the progress you have made over the year. A question.....have you met with any professional 'alternative' medical person? I am sure there are a host of very good and reputable alternative professional where you live. You never know, one just may be able to give you some comfort that you don't have now.

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    1. Hi Jim, It's something I have been looking into recently as it happenes, so hopefully something good will come out of it. Thanks for your continuous kind words and support

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  10. Hi H-E! Loved reading your update and I'm thinking of you! Sleep is also my biggest problem- and the headache that never goes away. I don't know what drug to try next. Maybe I'll give amitriptaline a try. I would love to havea pain killer option- do you mind my asking what you take? Im allergic to, NSAIDS, codeine, hydrocodone... I will be sending you healing vibes across the miles! X

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    1. Hi Elizabeth, thank you! I've been on amitriptyline a while now, it hasn't helped with my sleeping though unfortunatly but I know of people it does help so good luck with it if you do give it a try, for me it normally helps with pain so all is not lost. Sorry to hear you are allergic to various pain killers, that really is unfortunate! At the moment I take tramadol, dicloflex and paracetamol together or on less bad days codeine. I also take gabapentin although I must admit I am due to have a meds check up so this all could be changing in the near future. Thanks for you comment and sending hugs back :)

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    2. I have gabapentin and tramodol here at home. I've never gotten past 100mg of gabapentin and I've never gotten the nerve to try the tramadol. I might have to get the courage! Thanks for the reply. :)

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    3. Yeah it can be a bit touch and go with tramadol, I have had some side effects but that was when I was taking it 4 times a day and wasn't eating well, definitely needs to be taken with food! Good luck if you give it a go, hopefully it works for you

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  11. Sounds really tough, but it's good you are looking at the bright side and seeing the improvments. I find my blog is good sometimes I look back two years to see where I was at to gain perspective. I hope the improvments continue, sounds like you have been very severe at points. You are tough!!!!

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    1. I agree, that´s why I´m so glad I started blogging, it´s great to look back and it helps to see improvements when you otherwise might feel like you´ve made none. I have been severe yes, but I hope I never have to go back to such dark times. Thanks for your comment :)

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  12. i sincerely hope u are doing better & feeling better now. please take care *hugs*

    xoxo
    mochaccinoland.blogspot.com

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  13. I'm so glad you're doing better. Health issues can be such a, well, pain--but I'm glad you can see through it and compare where you're at now to where you were a year ago. I too am looking back at where I was health wise a year ago and counting my blessings. These things always take time, but they do get better with persistence. Here's wishing you the best!

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    1. Thanks for your kind comment. Even if progress is small it is still progress and we have to remember that. Wishing you all the best too :)

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  14. I can related to lots of what you described here however, I don't think M.E. is the term to describe my problem. So sorry that you suffer from so many symptoms that sometime they all interact together so it seems too hard to handle. Glad you have not been sick for a long while. Hope you could keep it up. You are only 21!
    Thanks for comments on my blog :-)

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