Normally I'm very positive. But at the moment I just feel like giving up, I'm fed up with everything being so difficult.
I should be feeling happy and excited as in a few days hubby and I are going on holiday to Italy. But, I'm doing what I always do when presented with a new situation - I'm kinda cracking up. I keep crying, having thoughts of sucide too.
I'm sure this is anxiety, as I'm fine in my normal world and routine, but as soon as a different situation presents itself I just don't seem to be able to cope!
What makes me feel worse is that I remember how holidays used to be, and then I think of all the things that I can no longer do. I used to feel excited and enthusiastic, now I feel more sad than anything.
I think, oh how will I cope with this, and how will I cope with that? Bloody ridiculous really. But I don't seem to be able to control myself feeling like this.
Does anyone else get like this.
Sorry to be so negative.
Thanks
Love Alison xx
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I’m no expert my lovely, but I get the same way when my wife and I travel down to visit friends in Somerset.... I think it might be that while at home we are safe and secure in our own world.
But when we are in another enviroment with other people, we dont feel secure.
Our friends in Somerset live in thier own little world, and when I try to explain about Ataxia, I think it goes in one ear and out of the other.
Along with Ataxia and my other medical problems, I try to be positive, I enjoy the drive down to Somerset in the car(I dont drive anymore) because I think of the car as part of our home, I sometimes feel fretful on arrival at our friends and spend a couple of hours in the bedroom adjusting to the new surroundings.
Alison my lovely, think about your holiday in Italy, look foreward to it, and all of the positive things you can still do, and forget the negative things you cant do, never forget the old days when we were young and healthy, they were generally the best days of our lives without a care in the world.
Thank you for your reply. This holiday we are attempting to go camping with a two second pop up tent!!! And 20 minutes to fold up to put it away haha! Then in the middle of our holiday we have 4 nights in an apartment in Naples, where friends will meet up with us. We have tested the tent which I can crawl in and out of. We have proper mattresses which fit into the tent - and really I'm really looking forward to sleeping with the open air.
But as it's a little tent everything else will be outside or out away in the van. Chairs, table etc.
I'm taking my winter dressing gown to go to the toilet/shower block. In addition I'm taking a plastic pint cup in which I'll have to have my morning pee!!! I'll never get to the toilet block in time!!!! I can do this discretely, a friend showed me how at a music festival! But getting dressed, I'm not sure how I'll manage??? Laying down in the tent or displaying all on the chair outside??? That I'll have to wait and see.
If the weather is at least not raining, I'm sure it'll be fine.
Really I'm sure it'll be fine.
But I so miss the old days when we would go walking along the coastline, clamber down on to the cove beaches, just strolling around the little towns hand in hand sometimes. I have got an electric assisted wheelchair so where it's accessible I can get around. I miss these little pleasures😞.
But really heyho, we just have to do things how we can.
Camping may be a never again experience afterwards- we'll see.
Our friends are great really - she has chrohns disease which affects all her joints too. So she's pretty limited too - but a long way from how I am.
I know I'm just being silly but I keep trying to give myself a kick up the butt and say how lucky I am to even be going on holiday!!
I'll let you know how I get on.
There's also very definitely the tiredness factor!!!
Hi it is all understanding what. you deal with, what you must understand is how it effects your mental emotional and physical state of being. Equistasi and Vagus Nerve Stimulator are two devices that can help you, look them up on YouTube or Google they both can be of great assistance to you. I have a VNS over a small time it help a lot.
Yes I've heard of these nerve vague stimulator. I'm going to ask the neurologist at my appointment at the end of June. Who prescribed yours or did you have to buy it?
I think I understand! I also do not like leaving my home much, except to familiar surroundings, people expect too much from me (I look OK and sort of cope, at a cost, some of the time) but I am learning ways of working around problems. It is a huge consolation to me that we traveled and explored as much as we did when we were younger, and fit. Many people wait until they are older (richer?) but we didn't, so I am so grateful for having had that when we were both energetic. So enriching. I hope you are able to schedule in rest time?
We traveled a little before, but made the common mistake of thinking of doing things later in life!! Now I tell everyone to do what you want to do as you never know what life has in store. I certainly didn't expect damn Ataxia!!
When my wife and I went on holiday in the UK or abroad I used to take my walking gear with me.
I would spend all day just walking while my wife sat at the pool.
I have not been able to do this for the last six years. Instead I now spend my time reading beside the pool.
It took a few years to get use to doing this as did all the other changes, such as giving up my motorbike which I used daily, boxing club, running and my hillwalking.
All the above was used to control my depression.
So instead I though myself into my work. I would knock my pan in come home and crash on the couch before going to bed.
Now I can’t even to that. The Ataxia takes to much out of me. I have been of work since before Christmas resting.
Thinking about going back to work now makes me nervous as I cannot move around the place and my work colleagues had to rescue me on a regular basis.
I real safe in my own home. I don’t need to deal with other people and I can do what I want when I want.
Thank you Bob, reading your post took me back to my younger days when I used to enjoy rambling/ walking, days spent on the Isle of Mull, or the south west coastal path in Cornwall. 🚶🏻♂️😀👍
Alison, you are lucky that you have a husband, I have to live with this dreadful decease on my own which is no fun especially when you have a ‘down’ day I am in tears a lot on these days. I was told by my neurologist that the Cerebella Atrophy which I have will not kill me. I choose to ‘walk’ as much as possible, it would be easy to use the scooter but I feel so long as I can use my legs I will. Enjoy your holiday I’m sure your husband will support you. As a tip I had 10 cards sent to me from Ataxia UK and I chose to have more printed which I give to people I have just met, these cards are brilliant and explain everything Jacqui
Yes I'm lucky to have my husband who is very supportive. But he does have severe back problems so he can't lift me etc.
There are advantages to being on your own with this damn illness, you can do what you want , when you want at your own pace.
I shall try to keep up with him on holiday. Hopefully he will go off and do his own thing while I sleep in the afternoons. We so loved rambling and walking before.
Thanks for replying. I'm just being silly. I should count myself lucky and stop all this self bloody pity!!!
Alison..... while you are camping at night, if its not raining, stick your head out of your tent, lay on your back, and look up......you will find the view amazing!!! 😀😘🌹 Xx
Thanks for that. What a great idea 😀I may well do, if it's not too cold haha. The weather forecast is not predictable at the mo. But I love looking at the stars - normally I can't look up for too long but as I shall be laying on my bed. . . .
I appreciate things are extremely difficult for us but try & concentrate on your holiday. It's what you make it. Yes i appreciate you can't do what you could but none of us can. Just do what you are able to safely.
I don't go abroad anymore as it's far too difficult. UK hols now only & even then i wouldn't attempt camping!
I used to be very active. Yes i have my down days but on the whole I try & be cheery. Most people have things wrong with them & so I don't unload all of my problems on them. I find people don't want to know anyway!
Try & stay positive. Think about things you can do rather than things you can't.
I bought myself a 'she wee' for at night so i don't hurt myself getting out of bed for a wee. I can go at side of the bed. Best thing i ever bought. Im so frightened of falling as I've hurt myself badly despite having a trusty walker. As for getting dressed. Just lie or sit on your mattress. It's surprising what is possible.
Have a lovely time. Enjoy as much as you can safely. Im sure your hubbie & friends will do all they can to help.
Dear Alison, you are so brave to even contemplate going camping, of course you are afraid, that would be natural even if you didn’t have Ataxia. Try to stay as positive as you can, the staff at the site will see that you have mobility issues. xx
I cancelled a trip last month as i felt anxious and uneasy. Scared to leave the nest. I have rescheduled for june...hope i go. I know a change of scenary will help. My biggest concern is passing out . That has happened 5 times in the last yr 1/2. I cant go into a pool alone, cant drive...
Would you be going on your own? I can't drive anymore either. Steps without banisters are damn impossible. They worry me. Oh well if I encounter any then someone will have to help me or I'll do them on all fours!!! LOL
I've never fainted though!!! However, is there really any difference fainting at home or on holiday. As long as you are not alone at that moment!!?
Dear Alison, i feel EXACTLY the way you do! Before being diagnosed with ataxia and having it progress over the years, I NEVER felt this way, so I know it's because of ataxia. I'm a positive person too and try to appreciate all I can still do, rather then dwell on what I can no longer do. I admire you so much for going camping while on your trip to Italy. If you've never been there, I can tell you it's a lovely country, as I went with my husband and we met my step-daughter there (who was living in Spain at the time) a few years ago. In terms of dressing make it easy on yourself, maybe some pull-on slacks or shorts and short sleeve tops you can just pull over your head. You can always wear a zip up sweatshirt or lightweight coat if it's chilly. What a fantastic trip to look forward to!!! Take care of you! My best to you..., ;o)
Hi Alison, I'm off to Kefalonia in September and already worrying about it in spite of the fact that we're going somewhere I've been about six times before . When I'm out of my comfort zone(home) I get anxious. Southern Italy is wonderful and will be quite warm but not too hot How brave you are to go camping with ataxia Listen to Don and have a lovely trip and enjoy Chris
In the early days of Ataxia I suffered likewise from being a positive person to an over cautious one. Anxiety is the cause, I find my speech, eyesight and balance are adversely affected if I become even mildly anxious, I avoid anxiety as if it is a plague. I am currently upgrading my workshop as a bolt hole for me to avoid those that create anxiety for me. Time to be selfish, in my case I would not travel any further than I have too. I have driven across europe a number of times which I can no longer do. Anxietty will lead to depression and at my time of life I cannot afford to waste a moment in time being depressed. Keep your neck and head warm also your ears free of wax (Ikeep cotton wool in my ears) and cosy.
I recall the words of a song I learned sometime in the 50's " don't tell me your troubles I got troubles of my own" If you Google it and listen to it you"ll see what I mean ;-)). Keep your loved ones close and good luck!!
You’re not alone sweetie - you sound like me! I often wish to travel to Switzerland to end it! When you see the sunshine and feel the heat you’ll feel much better. Your feeling is only a passing moment. Keep strong and think of things that make you happy! 😘
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