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PPMS advancing like a rocket train

I thought at 66 MS was bad enough, but suddenly becoming a widow without any warning has to be the worse thing anyone can face.

They say that stress makes MS worse well they were not kidding. I have lost so many abilities at the moment i just feel drained. I am now struggling to do the basic things.

I was a happy person even with MS now i am just not me anymore. Half of me has gone.

PPMS is now advancing at a fast state I can barely walk now and do basic things.

I dont understand PPMS will it get better once the pain of bereavement settles down, should i talk to my doctor, well i have actually she put me on amytriptyline as the pain at night is unbearable but it makes me so sick, and i dont see her until the 9th for a review again.

I am not sure i can keep going at this rate. I just want to curl up and switch off. I can barely get out of bed, and at night now i am on my own and have to struggle to get up and down the stairs as my husband used to help me when i was having a bad morning. I cant afford any more care and i am still above the savings limit for help.

Is there anything i can do to try and calm this disease down? I dont even know why i am writing this to be honest, i just feel so alone now and have no one to talk it through in the night like now.

Sorry i am just so down i dont look forward to getting up as its a struggle all over again.

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Crazy Chick,

The one thing you are not is alone. Writing about how you are feeling, whilst not as good as talking with a loved one is still better than just soaking it up on your own. I can not know how you feel at the moment, but I can empathise with some stuff and sympathise with other stuff. People on this forum will care, they will rally for you. It is not much but so much better than nothing…

All the best

Mick

CC my lovely, with all you are going through it’s no wonder you are struggling. I’m certainly not going to say it will all get better, I am not PPMS, but you need support, physically & emotionally right now. We can help towards your emotional side, I have no advice on the physical, but I’m pretty sure the MS society will have some info. Never feel you are alone, we will all endeavour to let you know as far as we are concerned, you never will be. If I could I would come & give you a bloody big hug, but I send all my love sweetheart xxxxx

You have been through a high level of stress and afraid PPMS doesn’t like stress , i have had a year from hell quieting down again and guess what MS doing the same time for me time i think , speak to a helpline or friend or even us here but look after yourself trish

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CC .

The one thing you are not is alone . I cant begin to understand what you have been through , and are going through . I know we are only names on a forum , and most of us have something in common , losing your long term love of your life is not one of them .

Im only new to this site , but already i feel ive made so many new friends who i can talk too and sound off at when im having a bad day and you are one of the stalwarts of this forum . You are a strong amazing lady CC , and whatever im going through pales into nothing compared to you .

Please be strong and in time your days will get brighter and easier and everyone here will be here for you .

All my best wishes and love Iain xxxx

Sending big hugs, so sorry it is all so horrible for you at the moment.

Hi CC,

Having PPMS is one thing and losing your husband is another but the two together is such a cruel thing. Anyone would feel drained.

We depend on our partners much more than we realise and when they are not there any more our world seems to evaporate.

You will know the saying:- “The darkest hour of all is the hour before day.”

At six in the morning, you have been through a long night which is dark in so many ways. I hope you get some comfort from knowing that people here feel for you.

Your GP can help up to a point, but for the pain in your heart there are no tablets. Only the knowledge that during his lifetime your husband was your rock and gave you love. The love is still there, in your heart. Feel and remember your husband as he was and how you felt when he lived, as he still lives on in your memories.

On a practical note you could try half an amitriptyline to see if you tolerate that better.

With my best wishes,

Anthony

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There are two things going on - the difficulties due to losing your husband and the difficulties of the worsening m.s. When both roll into one there’s a heck of a lot of ‘difficulty’ to contend with and it’s very hard to split the problem of one issue from the problem of another issue. I would focus on the bereavement issue first and get support/counselling/help to address things. If you go down this road keep the m.s. out of it altogether.

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Crazy Chick I can’t say any more to add to the overwhelming messages of support you have from the members here except to say that we are all here for you. I don’t know how you manage to get through the days let alone the nights without your beloved husband. In terms of Amitriptyline, I was given very good advice by my rehab neurologist, he said that I should take it no later than about 8pm. This way, it’s working when you need it to, but is out of your system by the next day. I do this and don’t have any roll over onto the following day. Perhaps you could try this. I think when you are feeling this low, and MS is just adding to your heartache and loneliness, all you can do is try to treat yourself gently. Do as little as is necessary to get through the days. Try to sleep enough. Try to eat sensibly. And if you need to write your feelings down on here, we will always read and attempt to understand your pain. Sue

Hi, im so sorry you are having such a truly awful time and I can’t even begin to know or understand how hideous you must be feeling at the moment but like others have said do try to stay in communication with friends you have on here.

do not feel bad for seeking advice as you are always brilliant with the advice you give all of us.

sending virtual hugs xxxxxxxxxxx

I am so sorry to read of your loss. It is only ‘on line’ of course, but you are in my thoughts. Rest plenty and treat yourself.

Lots of hugs,

Moira

Sending you hugs x x x

So very sorry to read this CC, I hope you’re feeling the warmth and support from us lot online. Sending you a huge hug. Sonia x

Thank you all for your messages of support. I am going to organise a bereveament councellor i cant deal with all this right now, its just too much. I had so many people supporting me before the funeral it made my head spin no i hardly see anyone when i need them. thank you again, its such a shock loosing him like that and we dont know why once i do it will help i think. xxxxxxxxxxxxxxxx

Glad you are having counselling i had it when i lost my husband and it did help.My head fetl like it was in a tumble dryer the thoughts in my mind just going round and round all the time.it will ease in time.i also found making a point in each day to do deep relaxation for anxiety helped a lot as i was having very severe panic attacks too.I felt like i had the rug pulled from under my feet and so very lost for quite some time and i wished i could have died with him too.You will get through this awful time given time.

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