hello, this is my first time posting here, though i’m not new to MS, initially RRMS in 2014 - now SPMS since november last year.
i do my best to stay positive but i’m struggling lately. i live alone and will often go days without seeing or speaking to anyone and i’m starting to feel like i’m not really here. body stuff is one thing, but i feel like i’m starting to lose my marbles a bit.
i do still have one or two friends left that will come and visit from time to time, and i hear their news and tell them the classic ‘i’m okay’, but i haven’t any news for them. i feel purposeless and isolated, like i’m living in groundhog day, and i don’t know what to do. i fear i’m running out.
i don’t have a question, and i can usually hold it in, just right now i needed to say this somewhere because i can’t say it to someone.
Dear BI Sorry to hear you are struggling like this. I feel a little the same however I do not live alone. My husband is out all day and at the end of the day I feel isolated. It is difficult to manage. I like my own company but I don’t believe it is good for most people do be alone like this. Are you able to go out and about? If so. Is there anywhere you can go to be amongst others? I am glad you have reached out on here. People here understand. I hope someone here Dan give you more ideas than I can. Stay on here. It is very good to speak with people who ‘get it’ Anne x
I have no practical advice sadly, but I do recognise the fine line between self reliance and isolation. I find this a great place for the odd rant, as most people here are non judgemental and have a genuine understanding of how this all feels. Your purpose should be to have the best possible time, despite all the crappy stuff.
Of your friends are there any who have a shared interest / hobby / passion ? They will probably know others with a similar interest so perhaps you can expand your range of visits / visitors or conversations, even if it is a shared joy with the season or TV - radio show or even a shared loathing for any political stuff.
I wish you all the best and hope things improve for you soon.
Funny we all can have tough times and I took a lady along to our support group last night and she is quite disabled with MS but she really enjoyed it and talked all night, cause I guess she is on her own and never gets a chance to talk to many only carers but she has a yorkshire terrier dog which gives her immense company and friendship…I know a dog isn’t for everyone and support groups aren’t always available but check your local authority support network and something might pop up like a befriending scheme or out and about - try to be positive and that’s rich coming from me but its the only advice i can give.
Hello, I’d just like to add my name to those above. I can’t suggest anything that hasn’t already been said but can I ask why you are at home all the time? Whatever can be done to stop the Groundhog Day effect there is most likely a solution. Best wishes, Anthony
Beta, As someone with PPMS…now 36 yrs…and now unable to walk unaided…l have never let it keep me indoors. I have used scooters for about 30 yrs. Have a little one to put in car…and a big all terrain one Tramper…and a TGA super sports, for getting out with my dogs. We go out everyday in all weathers. Go over field and woodland tracks. The super sport has a large wire carrier on the back. I can load two saddles on it…and go up to our stables on it when l ride. Obviously, l can only do this when my daughter or riding pal are with me. I do ride 2/3 times a week. Around the house l use a rollator to get about. Put a tray on the seat so l can put coffee or plate etc on. I have a stairlift to get upstairs…and another rollator on the landing to get me to my bedroom. The rollator ( topro olympus) is just the right shape to carry a round laundry basket…so l can hang out my washing. Also l fill the bag on the rollator with logs for the woodburner. It is useful for getting round supermarket.
Do find out what is going on in your area…you will be surprised what you can do. No such word as can’t. I do not go to any MS groups…as l do not want to be reminded of what l am suffering. There is a keepfit class locally that l can go to…most l have to sit…but l do my best. Tai chi, Pilates , yoga all good. And the instructors will help you find what you can do.
hello all, i am grateful for your replies and suggestions… i feel a bit more positive today… i do have to find something useful to do… i just miss my old life sometimes and i get frustrated… i don’t live with anyone, so no-one knows my day to day but me… makes me feel very separated from even the people i do still see sometimes, and i’ve definitely found out who my true friends are since all this began… i’m grateful for what i have, but still sad about what i feel i’ve lost… it is what it is, and i know i’m not unique and we all have plenty to deal with, so i feel a bit embarrassed by what i consider to have been a ‘little outburst’ on here, but again, thank you for a kind word, it went a long way
we all have our own way and you are an inspiration spacejacket, i hope i can find your resolve in myself… now, if i can just get myself a support network like a couple of scooters and a car and a family and children and dogs and some stables with horses out of thin air i’ll be well on my way how much is yoga tai chi and pilates class? is that a package deal?.. … … sorry, but you take a lot for granted there, and it made me come over all sarcastic but thank you…
Embarrassment is not necessary or useful in these circumstances. Sadly this is all part of the experience and even after many years I still get things massively wrong and end up feeling like a fool. Try to put it in the bank and use the positives (there are usually some to find) and be aware of the negatives so that when they reappear you can avoid them.
When I was less able to get out, we got a bird table and now all sorts of visitors show up and it is better than telly or the internet!
As I said before, this IS a place where you can have a rant and it is likely to be understood.
I totally agree with Mick. You have expressed the anger and frustration that most of us experience. People with disabilities are a separate race from mainstream society. Casual acquaintances drift away and you find out who your real friends are. And if you’ve got two or more then you are very fortunate.
For the rest of us it’s a process of starting all over again with a lot of courage to say, “Look - I’ve got a contribution to make.” I’m not going to give you any examples because I don’t know what your qualities are. I’m just saying what Anne, Redman, Spacejacket, Mick and you have said; that we all have to find our own way out of the forest.
While you’re working on that there’s this Forum where you’ll find support, encouragement but above all understanding, because getting out of that dark forest is what we’re all doing all the time.
See what I mean with this from Three Men in a Boat. - begin at “It was a glorious night. The moon had sunk, and left the quiet earth alone with the stars.”
I have been only recently diagnosed but like most people here living with the symptoms for many years. I totally get that feeling of isolation thankfully I can drive so get out and about as much as I can. Sometimes I drive to the local country park and just park up near the trees. Watching the squirrels and birds flit around and listening to the wind in the leaves etc has a wonderfully calming and comforting effect. A friend recently sent good wishes but then advised I should tell my children (grown up I haven’t said anything to the family yet) - just in case they thought it was SOMETHING A LOT MORE SERIOUS THAN IT IS. The friend has had cancer so I guess to her it’s nothing much but I found myself in the strange position of wanting to scream back 'you think this not serious!! but then I thought oh my God this sounds like I’m going into competition with her. Oh it’s hard - my legs are quite affected, found I couldn’t lift them a while back and now I am getting pins and needles in my arms…scary…anyway, I intend to join an MS support group just as soon as I can. Really hope Beta and anyone else feeling isolated can do the same.
You’ve said something that I find very thought provoking. If you feel that your friend, who has had her own crisis to deal with, doesn’t empathise with you, then how can others, who have never had a serious illness, be expected to understand? Regards, Anthony
And the truth is, that they can’t truly understand. Even the people with whom we live, who essentially ‘share’ the day to day cr@p of MS with us, don’t truly understand. How could they? To us, who live with the sometimes embarrassing, sometimes humiliating, sometimes funny, sometimes heartbreakingly sad, symptoms of MS it’s straightforward. And for the newly diagnosed it’s frightening as well. To others outside of the diagnosis, they don’t necessarily get our humiliation, embarrassment, fear and dread.
Someone who’s had cancer should perhaps understand the fear of the unknown. But unless they really understand MS, they can’t be expected to know just how serious and frightening the diagnosis is.
Hi i am ppms. when i lost my husband i lost my will to live to be honest. I had visitors to chear me up. Just having this disease can make you feel isolated and alone i wrote a blog about it. I find blogging gives me a door to meeting others with chronic illnesses too. An indoors support group.
When i moved to sheltered my GP felt it would be safer for me, and less work, I am never alone, and sometimes i just wish for peace and quiet lol.
Why not join the MS society, ring them and they can advise you of your local groups. Join facebook and NEXTDOOR as you can find out what is going on in your local area.
ring your local adult social services and ask for an assessment if you havent had one, for direct payments. I had a care worker well a personal assistant and she would come and help me and take me out.
even in my little town we have tai chi classes. in our community club.
there is always something going on i wouldnt know about it if i didnt belong to facebook local groups.
its amazing how many people are living isolated lives in the area who you could perhaps meet.
I too am like space jacket i have a mobility scooter and take my doglet out on it. you can buy them second hand cheap but its my savior believe me. One of my male new friends from sheltered has a Travesco covered one and he goes to pub everyday in it lol. He has some health issues not sure what they are, but finds his friends there in the pub. another guy with MS he has a scooter is out everyday chatting in local cafes or the pub.
he would be on his own otherwise.
Your never along if you have Internet. But i know how you feel i felt like that when i was in transistion from loosing my hubby to moving and selling my house. It wasnt a good place to be.
I hope you feel better today. I would ring MS society in your area and find out if there are groups and adult social services, and aged uk if your in that age bracket. xxx
Yesterday i was in the kitchen and suddenly something was crawling in my sock under my foot it was horrible omg i thought it was a biting insect or something although i didnt have a sting it was just moving in the same place. EEK i thought a spider.
My sock came off and i stepped back holding onto the counter cupboard for balance to move out of the way of whatever it was. NOTHING. There was nothing there.
Jeez now that was a new one for me lol. I was relieved and annoyed at the same time. I mean what was that all about lol.
Sometimes embarrassing, humiliating and funny all at the same time. I had the ultimate shIt storm unexpectedly in a small hospital bathroom when I had my colostomy. It was one of the hottest days that summer. One of the wonderful health care assistants had to clean me and the bathroom of the worst of it. The following day, I thanked her for her wonderful kindness, she said ‘it was OK, we had a laugh didn’t we’. Which was absolutely true. What could have been dreadfully embarrassing but we laughed throughout the whole experience. Sometimes nurses and HCAs are so wonderful.
how much is yoga tai chi and pilates class? is that a package deal?.. … … sorry, but you take a lot for granted there, and it made me come over all sarcastic