You are feeling how I feel.my boyfriend works too and as much as he thinks he understands he really doesn’t.I cant really walk on my very well and I’m in my house 6 days of the week.Its so lonely and I just wish he would understand!
I am lucky I have a very understanding husband but I have had ms from aged 24 - now I am 62, This is my story and how I got to where I am at now.
His histology came back benign thank goodness! so crying buckets has stopped!
Its very hard when you are younger as you feel so isolated and friends melt away. Without the MS Society I don't know how we would have coped. We met some younger people and formed our own group and those of us with children found it a great solution as we lived close by and we had some support outside the Society and in.I had a car with hand controls so got about and it was my lifeline,there were no drugs worth anything back then and did more damage than good.
I managed to even out at about 35 and went to university in a wheelchair and retrained for 3 years got a job and did 13 years at work. Lots of help was available then - now hmm no comment. My deafness was my issue and I retired 15 years ago.I started a degree with the Open University as I couldn't just stop.I managed a Diploma but the last 60 points for a degree were out of reach. I then went on the do other things computer related but it was too much .
2 years ago with no warning I went down fast, and am mostly in bed now. I miss my friends at work and as I am an relatively old lady at 62 I have lost a lot through cancer etc. So a new chapter is beginning and I have to get my head around being the cared for person. I have had a damn good innings for such a long time in a wheelchair and sometimes you just have to grasp that moment and try to turn it around when you feel your lowest.
I can't thank the MS Society enough even though I don't go to meetings now, But they gave me the strength and the skills to start again. From a career in ruins , friendship and so much support, I started over.
I occupy myself with word games online scrabble and such and Facebook keeps me in touch with family who are scattered.
I know I need to get through this patch again. I have been through it so many times but you have to belive there is some light at the end of the tunnel. For me it was academic but its not the only way, we all have coping strategies.I think this bit has been the hardest as I have to try and find a way forward. At the minute not doing too well but I will get there- I have to!
Remember MRI scans were not even invented when I was diagnosed it was so long ago. But I wrote down all my thoughts and feelings and it seemed to help get rid of them. Maybe that would help you I am no expert just its what I did.
Our marriage has survived 43 years through hard work and talking to each other. The key is trying to get that balance, I know I am rambling on but MS doesn't mean the end. Together we worked out a coping strategy where I shared the none physical work . A mortgage and children its a hard part of your life but you get through with determination you can make a relationship work.
The MS Society have some good booklets and maybe the MS Nurse is a way forward who could explain what it happening , with you both there. There are fatigue groups in my area where you can share and look at ways of conserving energy. Don't give up on him ,he he will likely be grieving and feeling as low as you are and men ... well they do this, work more to avoid talking sometimes.
Its easy to slip into daytime TV and just going through the motions like I am at the minute, But on days you feel well just go for it . The smallest things give me pleasure now. Conserve your energy eat as well as you can and talk and try to explain.
I wrote of of this to show its not the end. It can be a beginning as well. Now I need to look for another coping strategy at the end stage of an amazing life.I have done more than I maybe would have dome as an able bodied person. But this won't be your experience, you have new drugs developing and things happening beyond my wildest dreams back in 1970, possibly before you were born.
The thing is to get some help and I can honestly say the MS Society was my salvation.
A virtual hug and have a good Christmas. We can't always turn the clock back but with help we can find a way forward.
Xara
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Hi Xara
Yours is a really inspiring story. What one person can achieve from a wheelchair, back in the pre MRI, DMD, MS nurse and internet days.
Congratulations on staying happily married for all those years.
I so hope that you still have some good times and can manage to have a lovely Christmas with family and friends around you.
Sue x
Hi Xara. I thought I had thanked you for your original reply to my post but I can’t see it so maybe I hit the wrong button. Another “senior moment”. They happen quite frequently now I’m 74!! You speak of being 62 Xara so no age at all really lol. My original post back in March seems to have been misleading and for that I apologize. I have actually had MS for about 30 years and it was “benign” at first then I began relapsing and remitting and it was when I was diagnosed with bowel cancer 20 years ago that it became more of a problem. It hated the radio therapy and chemo. Who wouldn’t!!! The MS nurse describes it as “secondary progressive” on my annual visits these days. Certainly my balance has deteriorated big time and that has nothing whatever to do with an over indulgence of Christmas spirit!! I posted on the forum back in March 2017 because I was genuinely interested to see if anybody else had the same combination of Bowel cancer and MS and how they cope because “running” to the loo quickly is obviously not possible. We have replaced lots of our carpets for hard flooring which makes life soooooo much easier. I still drive and walk, albeit slowly with one stick and one hiking pole to give me stability and more of an upright stance and avoid crowds at all costs. They make me feel very vulnerable and I’m sure lots of you feel the same way. Like you Xara I’ve been married a long time - 53 wonderful years. Am delighted your husband has been given the “all clear” after his prostate scare and I’m truly very sad that your MS has now robbed you of the ability to be independent in your wheelchair. You have achieved so much and should feel proud - extremely proud. I also play on line Scrabble so if I see the name Xara on the “WORDS WITH FRIENDS” site maybe we can enjoy a game or two. Who knows! Take care Xara
Hello I’m new to this, what do you do when you are loosing who you are
Hello Jaxs
I can see you’ve posted two comments on otherwise seemingly unrelated topics.
May I suggest that you start a new topic. If you see the tab marked New Thread, give it a title then ask your questions.
This question in particular is rather awkward as it’s not quite clear what you mean. By ‘losing who you are’, do you mean in a cognitive sense or personality, or physical. Or perhaps your connection to the world has altered with a diagnosis of MS, if you have been diagnosed.
If you explain a bit more about who you are, what you’re having trouble with and where the forum members can help, I’m sure many of us will be glad to help if we can.
Sue
Hello everyone I am sorry I am going through a deep deep detachtment from the world. I tried to send a post and accidentally sent it to pm. I used to be a writer and singer. A photographic artist I also did street ministry. now I’m just looking at areflection in the mirror of someone I don’t know. No wants to be around me or help me with anything or even talk to me about this.
I’m hear and I will listen as I’m sure many here will
Hello again
You do sound utterly depressed; clearly you feel very alone in the world. A diagnosis of MS is something that is difficult to get used to (I assume you’ve been diagnosed). You can feel angry, distressed, saddened, and indeed as though your entire personality has altered because of MS.
It seems as though you have become very disconnected from the person you were before MS. Can I assure you that you are still the same person. If the people you knew before don’t see you in the same way they did, surely it’s their loss. Those people can’t have been worthy to be your friends.
You should be able to continue to write, sing and take photographs. That creative part of you will, I’m sure, eventually come back to you.
I’m not a person who encourages people to ‘accept’ their diagnosis, nor someone who wants people to ‘focus on the positives’ or cheer themselves up. When you are first diagnosed, it can take a good long while to get over that diagnosis. Don’t be in too much of a hurry to see positives nor to accept the disease. It’s OK to shout and scream at MS. It came into your life uninvited and will take some time to accommodate.
You said in a different post that you are planning to move to London and asked about accessing treatments. Once you have moved, you will need to sign on with a GP, and to find a neurologist. Assuming you have a neurologist now, you could ask for a referral, and for your notes to be sent to a neurologist recommended by the current neuro. It should be possible to have access to disease modifying drugs, assuming you are diagnosed with relapsing remitting MS.
I wish you the best of luck.
Sue
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Great post Sue. x
Hi Jaxs your still fighting as you are HERE, asking which is a good sign.
Sue said a lot, i hope it gives you comfort.
When i look in my mirror I see a worn out old women but inside my head I still feel young and want to do lots of things, but my monkey chatter keeps telling me I cant do it. So i gave him a banana to keep him quiet for a bit and i went outside and potted up some lettuce plants, tidied up my little patch of garden, and sat back and just looked at the life around me. Birds squabbling on my feeder i have given them, 2 lazy cats who just sit in the sun all day, my old dog, suddenly pricks up her ears and whoosh she is gone like a bat out of hell even with dodgy hips lol and from the corner of my eye I see a squirrel running as fast as it can up a tree to get away from Lucy my dog. Who is by now trying to scrabble up the tree and by this time I am laughing so hard my sides hurt.
what I am trying to say is you have to change your mindset your are only seeing this negative person in the mirror who you feel you don’t recognise. It is you. why cant you write, you wrote to us? why cant you do your photography? start small start close to home do some still shots its all still there it really is.
You know something weird happened to me. I have never been a writer or had inclination to write. My dad was he would wake up early and write down his thoughts or a poem. Me not so much i would be writing up exercise books for microsoft word, excell or access now i can barely use either of them.
Suddenly I woke up with the urge to write. I love it now and will just write what come in my mind, i even submitted a story to creepy pasta not sure it will be published but ME? OMG the thought of me doing that where did it all come from.
I write a blog about my journey too.
https://livingdailywithmultiplesclerosis.com/2018/03/04/the-beginning/
this is the story i wrote i have no idea where it came from in my warped brain lol. actually re reading it i think i need to sort out a few facts so my clarity is getting better.
when i started to get sick i did notice one thing, I seemed to have developed dyslexia. I also found myself writing gobblydegook. so frustrating as i had to always check my work and i still do. i find words wrongly used or misspelled
I have the concentration levels of a gnat and can not read books anymore. my mind drifts off.
I know its hard when we have MS and there are so many things we have to change or adapt too, but you are still there.
I cant believe I am lol. I have been through hell and back not only was i diagnosed with PPMS a week after my mum died, but i lost my husband in 2017 too. had to move from our home which i had been in for nearly 30 years and move to a one bed tiny flat as i couldn’t cope.
Yeh things have to change but you dont have too. you are still there it may take a while to put yourself back together but you can do it. I did at 68 i always manage to find something positive every day.
I cry later when its quiet and dark outside.
You have probably put up a shield a force field and people are not sure how to penetrate it. they probably see a sadness in you and are scared to say anything. but you have reached out to us, which is a start isnt it? I do think you need to see your GP and get some help.
we are all in this together and we all cope our own way. No one can tell you how to cope with it, it is something you have to work out for yourself as we are all different.
BUT you can do it, and i for one look forward to perhaps reading some of your work when you feel better… xxx
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Thank you guys so much, I have had Ms for quite a while. I am in stage 2 now and I have developed gastroparisis and I my left left side a person againand I don’t get along anymore. I talk to my doctor’s but they don’t really hear me. It’s like songs I used sing I don’t remember anymore and I used to set down at a canvas and begin to paint a nd turn out a beautiful work. Of art without looking at anything. Now there is nothing the same with my poetry I dont know how I’m supposed to to feel. I want to live life and be