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    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.

    Comment


      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.
      Dina

      Trying to keep positive, but not always managing.

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

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          Thank you Gillette and Sheila.

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            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
            Warmly


            Andy

            ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
            MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

            "Things turn out the best for people who make the best of the way things turn out"

            Comment


              Hi PT,

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

              Love Terry

              https://youtu.be/qVnbTMMSYI8
              TB once said that "The forum is still the best source for friendship and information."

              It will only remain so if new people post and keep us updated on things that work or don't work and tips.

              Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

              Comment


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

                Comment


                  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.

                  Comment


                    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
                    Dina

                    Trying to keep positive, but not always managing.

                    Comment


                      Me too Panniertank, I really miss driving and doing my last job as a driving instructor. As Dina says about keep using the service to get you out from your own four walls. I get fed up staying in too despite having a husband who takes me out sometimes. Lynne x
                      ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
                      I'm staying positive and taking each day as it comes.

                      Comment


                        Thank you Gillette and Lynne. I am so sorry you can't drive anymore when you enjoyed it so much.

                        Comment


                          Hi Panniertank,

                          I am sorry you are so anxious and panicky, especially in the night. Things always seem the darkest when we cant sleep and it takes a while to get the dose of any meds right for you.

                          I totally understand how heartbreaking it is to give up something you love permanently and it must be doubly hard if you live alone. I really struggled when I had to give up driving, a job I loved and my independence. I am lucky to have alot of support from family and close friends but it is hard to have to rely on other people.

                          I totally understand that it's easier said than done but I try to focus on what I can do and what I enjoy still , like reading and music and I try not to look too far ahead. Noone in life knows what tomorrow will bring.

                          I hope you are getting the professional help you deserve with practical solutions in the house and also the emotional support to come to terms with things.

                          Look after and be kind to yourself,
                          Love Debbie x

                          Comment


                            Thank you Debbie,
                            You are right, it is good to try to focus on what you can still do and enjoy. I am glad you like music and reading. I used to as well, especially live music but something has happened to my mind and my ability to concentrate. I struggle to read and watch tv programmes or listen to music.
                            In my area there is a specialist MND clinic and it has been very helpful, especially my OT, physio and social worker who have arranged lots of things in my house like extra handlebars on my staircase and front door, a riser recliner chair ( paid for by MNDa, very kind ) provision of walking frames etc. So, I have a lot of practical help ( and from the local MNDa staff/ volunteers as well) but not much emotional support . But my palliative care doctor has told me about a course they run , one day a week for 12 weeks which can help with things like anxiety. So I think I will apply to go on that.
                            I went to my ( 3 monthly ) MND clinic today. I was taken in a wheelchair and ambulance ( I am fortunate in my area there is a non emergency ambulance service ). I can' t believe how much I have changed in just 3months because at my last appointment there I drove myself there and walked from and to my car just using one crutch. And 2 years ago I did a number of walks in the countryside near the town where the hospital is located, often up and down long, steep hills!!
                            My neurologist thinks my MND has been progressing slowly and observations by my OT also suggest that my balance and ability to walk is being exacerbated by my anxiety.

                            Comment


                              My balance seems to be worsening again. I have to use my Zimmer frame to walk in the house but, strangely I only use it downstairs. I don't use one upstairs ;- maybe it's psychological because the upstairs rooms are smaller and there are things like the bed to fall on. But, the past 2 days I have had to do my clothes washing and I have really struggled to safely get the clothes up and down stairs and into and out of the washing machine and tumble drier and into the airing cupboard. Just now I climbed down my staircase and even with both hands on the stair rails ( provided by my OT ) my balance felt bad and I struggled to descend the stairs. It is so confusing because my legs have the strength to climb the steps.
                              As ever I am terrified about my prognosis and the past months have taken me out of denial about my diagnosis. I have largely been stuck in the house for several weeks because I can't walk outside and/ or access my car. And now, if I have to use my Zimmer frame upstairs I fear I will not Be able to do things like my clothes washing or making my bed ( which I have to do every morning) . And I may not be able to access my en-suite shower.
                              Ever since my diagnosis a part of me has tried to be positive, taking one day at a time and trying to maintain my independence doing things like my food shopping, cooking, clothes washing etc. But, as ever, MND makes sure it negates any attempt to be positive. Living with MND is devestating for anybody but, living alone with it is terrifying. Sometimes I feel I am living in hell and MND is the devil. A part of me sometimes wishes I had the courage to murder that devil.

                              Comment


                                Hi PT,

                                I am similar to you in that I don’t use a walker upstairs because I have two steps to negotiate. I believe the fear is caused by a lack of confidence as I ascend okay with two rails but coming down is daunting. Try to carry out the tasks you are used to but remember that every movement needs full concentration. Look upon movement as requiring choreography.

                                Best wishes,
                                Barry
                                I’m going to do this even if it kills me!

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