I‘ve had a bit of a forced break due to a bad migraine week. Well, I suppose I started off relatively lightly with the toenail post. This is a rather serious one and causes me a lot of sadness.
I have always been a passive type of character and coupled with the illness this has made me create my own prison-that does sound rather dramatic, but basically I hardly go out any more. I work from home teaching English and my students are my company as well as my work and I also have a lot of visitors, and of course this is very positive. But as regards going out, this has just become worse and worse. I probably haven’t been out of the house after 5 PM for maybe four or five years, which is pretty frightening when I see that written down. My friends take me out to the park early in the morning maybe three times a week, but I can’t even remember the last time I met someone for a coffee in the city.
The evenings are a write off because I just feel so tired and what little strength I have in my body seems to have disappeared by the early evening. Maybe I’m still not comfortable in the wheelchair but I’ve been using it now for two years and I think I am now used to it. The toilet issue is also a hindrance and is often on my mind. But if I’m honest with myself maybe these are all excuses not to go out and I have made not going out a normality.
I certainly need some therapy to deal with this, but I just wondered if there was anyone else out there who could relate to this.
As I looked out of the window yesterday around 7 PM there was a guy probably in his 50s with a crate of beer strapped to the back of his wheelchair heading through the town without a care in the world! And this made me smile but also feel guilty and sad.
Oh how I know your dilemma. I now have the confidence to go out at any time because I plan the logistics of where I am going in tandem with my needs. I also have toilet related contingency strategies which is a very significant factor. (A lot of big words in that sentence.) It can be done but it takes a bit of homework. Talk to your friends about this. Friends are friends because they like your company.
I feel your pain Richard. I never go out much myself its so much hassle. I am in bed by 5/6pm anyway as i am totally wiped out by then.
However i agree with Steve talk to your friends and ask if they can take you out more or visit you in the evening or even arrange a little get together at your house, then go from there.
I know just what you mean Richard, you feel like you should be doing more,but you just dont have the drive.
i am quite happy in the bubble i have created for myself,yes i do get down at times,but try to be thankful for what i STILL can do,which isn’t much.
i try and push myself at times to do more but it always leaves me feeling much worse and takes me weeks to recover from,so its easier not to try at all most of the time.i used to push myself to go on holiday but gave that up too after the last 2 were spent in bed while i was there and all i did was worry if i was going to able to get on the plane back home.
We do seem to put up a fence - or is it defence - around us, like a comfort blanket. Being out of sight of a loo is the biggy for most of us. Having a SPC for my bladder did give me a ‘new look’ at life. Knowing that you are not going to wet yourself does a lot for our self-esteem.
And of course, we nearly all, have symptoms of depression whether we acknowledge this or not. These symptoms can be caused by B12 deficiency and VitD3.
l now do not take any of the meds prescribed by GP for MS. lnstead, l take B 12 and Biotin plus B Complex -Alpha Lipoic Acid masses of Vit D 3 [Dr Coimbra’s protocol] Magnesium Glycinate and L-Threonate -VitK2. Thiamine. This cocktail has given me energy - woken up my brain/memory. Now l get on and do jobs l have put aside for years - l am even planning a long road trip to take my elderly mum to see my brother. Haven’t driven very far for years. ln fact l feel more alive than l did 20yrs ago.
Also, l have joined a ‘Rock Choir’ - which is a weekly meeting 8pm -9.30pm. l used to be in bed at that time!!! Now l am all tarted up and actually picking up friends and driving them to choir rehearsals. Have to rely on my rollator to get me in - did think about trying to manage with a stick - but getting up from a chair is still a bit of a struggle. They are a lovely crowd of people at Rock Choir - and they do go to ‘gigs’ - but l am not keen on doing that - keep coming up with reasons/excuses when l should really just go for it. They are organising a training session with ‘Sons of Pitches’, winners of Gareth Malone’s Naked Choir.
Being unhappy with our lot - is soul destroying. Not all of us have happy marriages - and this is not always because of MS - it would have happened anyway. But to get out of a unhappy,miserable relationship takes more planning and bravery for us but is do-able.
l enjoy my couple of hours out - but as soon as l arrive home its back to normal. l always leave the motion sensor light on so l can find the front door keyhole- but him indoors always turns it off. l leave him to get his own dinner - and come back to a kitchen that looks like ‘students digs’ - every pot and pan used and left. Sometimes even the fridge or freezer door will be left open. And beer cans everywhere.
Thankfully, l have 4 beautiful dogs who give me unconditional love.
I don’t go out in the evening when I’m at home either. I manage to stay out of bed till about 9pm, but then I’ve always had at least an hour or two laying on the bed (sometimes in it and asleep) in the afternoon. My best hours are about 11am to about 3 or 4 pm. It takes me so long to get up in the morning that it’s a real effort to get up early. I went out for dinner a couple of weeks ago. I was ruined the next day.
Yet when I go on holiday and stay in a hotel, we mostly have dinner at night and I manage that OK. I still have to have my regulation couple of hours laid on the bed. Saying that, we haven’t been on holiday this year, so the total number of times I’ve been out of the house after 5pm this year is 1.
And I’m quite reluctant to go out a lot of the time, so in a way I’ve made my own prison, but I don’t feel in any way depressed.
Very rare that I go out after dark (especially when its a full moon). Where I live, there are tales of the three people in wheelchairs/scooters that do the rounds on a regular basis, all three people have MS. one is younger than me, one been here a year. Ho ho, two are on a pub ban and one is banned from the shops for buying booze and rocketing through the village laughing with a radio blaring loud, bumping into windows and things. The relatives are despairing but as one said to me, ‘At least he is enjoying himself’. Whilst I am not one to promote drinking in fact I hate it, I am up for sharing in people’s enjoyment especially if they have been dealt a bit of a bum hand. I had to help one gentleman racing to the pub in his best suit as he was late for darts last year, unfortunately as he reached me his wheelchair bumped over a tree root and it tipped him out. Well, I can’t even get my socks on most days so I wasn’t much help as he was fumbling around in the dirt trying to get up, but one of my old neighbours who was a builder came out and his muscle helped. So the chap went off brushing his dirt off his jacket saying thanks and he hope he won at darts this week. He didn’t give a s----. Made me giggle for a week.
There have been quite a few ‘adjustment’ posts on here. Getting used to - accepting and that sort of thing. I think that part of the adjustment however many years it may take and it doesn’t always work, is realising that if you are in your prison, it is always at the same time, your safe place. One of my life’s aims (I come from a funny place), is to make sure that my home is warm, safe and once you shut the door, yours if you are lucky). I stick to this, my kids think I am very boring in my outlook but it is my way of doing things so there! Anyway, as time goes on and I go out less and socialise about once a year, my simple bungalow is my safe place. I too occasionally teach piano if someone asks, I am glad they come to my house, as a young pupil said, ‘It is exciting because each lesson is something I would not learn anywhere else’. I also make sure they have ginger ale (non alcoholic) because they probably won’t have that anywhere else.
Last rambling, my oldest pupil was 84. I taught piano. Another pupil could only use three fingers on one hand. Another had disabilities and forgot everything from week to week. What about opening up your teaching to , people who are of a certain age, people who struggle, people who have always wanted to learn but didn’t?
I bet you could pick up some books really cheap at a charity shop for either of those. I think Oxfam even have an online second-hand bookshop.
Learning new/relearning old things is always good, keeps your brain active, and that’s never a bad thing - you don’t need to be great at things, just enjoy doing them for their own sake.
That goes for everything. Stop worrying about what other people may think - if it suits you, I don’t see a problem.
Bonjour Carole, learn a word or phrase a day. You have spurred me on, I loved Spanish and all of my year’s learning from a long time ago was left in an ex-boyfriend’s place. So I have a diary with big boxes to fill, a Spanish word a day will now be in it.
If I feel like the walls are closing in, I go out in the garden in my nightie just to feel what it is like. Sometimes in the night it is cool, lately it is almost frosty, this morning there is a breeze blowing. Then I’m back inside searching for the heating button. If I can’t go out, which I couldn’t a while ago due to being laid up in the front room for days, I open the windows to hear the birds.
Many many thanks for all the replies - it is therapy in itself reading your entertaining and useful comments and also knowing that I am not the only one with such issues.
On the positive side I am planning to go to the concert hall with my friend on Sunday-okay it’s not in the evening, but if I can manage it this will really give me a positive boost. I actually feel a bit nervous already-this is how bad it has got.
I now have a new electric wheelchair. The name is e—fix. I had a roll to the local park this morning. I still need to find the courage to go further afield! If I can make it back to the Aldi supermarket, I will be happy man
I have also added B12 supplements to my regular intake. I have had a slightly better week since I have been taking them-fingers crossed.
Again it was lovely to hear all your comments-I am so glad I got round to rejoining the forum. I will have another read through your comments over the weekend.
