Announcement

Collapse
No announcement yet.

new member / single person

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Gillette
    replied
    We do understand, Panniertank.

    I used to really enjoy driving and the independence it gave me. I had to let my beloved Alfa Romeo go when I needed hand controls, which really upset me. I bought a new car and had hand controls fItted. It had only done 700 miles (which included a trip to Scotland ) when I had to sell it so, believe me, I really do understand.

    You need to find a way of coping with having MND, which is one of the reasons why it is so important to have some sort of psychological support. Do please make use of any such services that you are offered

    Leave a comment:


  • panniertank
    replied
    Thank you all. I may have said it before but my main way of dealing with anxiety has been trying to be active. But my ability to be active is being ruined by this condition. Just being stuck in the house all day every day is becoming awful. I have had a specialist company take me out in a wheelchair/ car and I will use them again but, that is very different to driving myself. Things like driving and walking are examples of being active. My last job could be stressful and I often awoke feeling depressed and anxious about going to work. But then when I arrived in work I felt a lot better because the activity and concentration of driving to work for about half an hour helped counteract my anxiety and depression. Not everything makes me anxious;- for example I can remember one job I had where I was lucky to be about 30 seconds in front of an accident that could have killed me! Yes it did make me more anxious and cautious for a while being in work but, not to the extent of going off sick from work. I think the main cause of my anxiety is things I can't control or are difficult to control. So MND is a terrifying condition for me. Whenever I try to be positive and counter it, it always eventually kicks back with things like my falls. And now I am struggling to do basic independent things like getting dressed. For example I have adrenalin building up in my chest when I struggle to get my legs in my trousers. I am terrified of becoming more disabled and losing my independence and ability to be active.

    Leave a comment:


  • Sheila
    replied
    I think these relaxation videos are very good. You can get some good sound ones , like wind, birds, chimes etc .
    Sheila x

    Leave a comment:


  • Terry
    replied
    Hi PT,

    Do give this a try if you haven't already done so.

    Love Terry

    https://youtu.be/qVnbTMMSYI8

    Leave a comment:


  • nunhead_man
    replied
    Good afternoon panniertank

    I can only second what Sheila and Dina have said, and perhaps add that you could ask your GP to see if there is anybody who could talk to you about your panicking and what underlies it it might be what you need to stop it happening?

    Having said that, I do feel for your circumstances although there is little else I can do

    Leave a comment:


  • panniertank
    replied
    Thank you Gillette and Sheila.

    Leave a comment:


  • Sheila
    replied
    Hi panniertank
    Sorry to hear about your panic attacks, but try your best, you are doing the best you can.
    Sheila

    Leave a comment:


  • Gillette
    replied
    Dear Panniertank, please remember you’ve had several nights without panic attacks. Just because you had one last night doesn’t mean they will become as bad as before.

    You’ve done brilliantly since seeing your GP, hang on to that. You can do it, Panniertank.

    Leave a comment:


  • panniertank
    replied
    Oh no. I've had 5 nights since my medication changes ,without restless leg syndrome and panic attacks whilst in bed ( but still bad insomnia ). But just now I've had a panic attack again. It is so hard to explain but I am tossing and turning in bed and don't feel comfortable or settled in any position and my body panics and forces me out of bed. Or maybe I am genuinely wide awake and that forces me out of bed. Even though my insomnia is still bad I felt positive and relieved about the panic attacks in bed ending. But now,as ever my health conditions are winning again to ruin my life.

    Leave a comment:


  • panniertank
    replied
    Thank you all. Gosh Andy, 15000 miles a year on a bicycle is incredible. It's more than I used to drive my car every year even with my roughly 20 mile commute to work and back, 5 days a week!!

    Leave a comment:


  • nunhead_man
    replied
    Good morning Panniertank

    I am pleased to see you looking more positive - I think I would be a much worse place if it were not for the fact that I presently live with my wife and daughter who are occasionally very upset and endlessly supportive. So I am impressed with how well you are doing.

    My recipe for movement is to keep myself moving in as many joints and bits of me that I can I keep flexible but I do not overdo it in the way that I used to - I was looking back at my logs the other day and realised that there were over ten years where I rode my bike more than 15,000 miles in a year, including several years where I rode what we call 24-hour events at the end of the season where one rides competitively as far as one can in twenty-four hours.

    Leave a comment:


  • Terry
    replied
    Pleased to hear that you more comfortable in bed, PT,

    I know what you mean about euthanasia, I might of done it years ago but it would be nice to guarantee that I could go with dignity.

    It's terrible about those disasters and killings.

    Love Terry

    Leave a comment:


  • Gillette
    replied
    You’re welcome, Panniertank

    I understand your wanting to maintain nerves and muscles but you need to balance your physical needs with your mental health needs.

    Fingers crossed you and your OT/physio can improve your confidence so that you can soon go out and about.

    Leave a comment:


  • panniertank
    replied
    Cheers Gillette. My social worker has mentioned getting me help. It all depends on whether my OT / physio can help me get confidence to walk outside and access my car or not. Then I would have carers provided to help me get in and out of my car and go for local journeys to maintain my driving skills and get out of the house. But if I can't access my car then yes, maybe I could have the carers to help me with household tasks. But a part of me feels I have to stay as active as possible to maintain my nerves and muscles that aren't affected by MND yet and to counter my deep vein thrombosis. I am not wheelchair bound yet but I have used a specialist motability company who have taken me out in a wheelchair to visit my mum in her care home.

    Leave a comment:


  • Gillette
    replied
    Panniertank, I am so pleased you’ve been to see your GP - well done! I hope, for your sake that the referral/s is/are acted on quickly.

    Have you thought about getting some help with doing household tasks to save your energy for more enjoyable things?

    By the way, don’t be fooled by what you see posted on the forum. I’m sure pretty much everyone on here struggles at times - I certainly do - and yet some of my cheeriest posts were written when I have felt desperate

    Leave a comment:

Working...
X