Your Thoughts please?

Primary progressive MS
#1

Hi All,

I need to offload and get others’ thoughts please?

My other half is a good man. A kind man. A man who is working all the hours he has to make our future a better one.

A man who won’t talk about feelings etc.

Get the picture?

He won’t talk about the MS and how it is affecting me. He has said in the past, when pushed, he can’t fix me so he doesn’t like talking about it. I understand that. However. I find that very lonely. My family are the same. I don’t have anyone to talk to about it. Except my good friends on here.

I suffer badly from depression caused by plaques in the brain, not as a reaction to having MS. That is a huge battle and I am on medication.

I have felt quite lucky. Until 6 months ago the MS affected my lower half only. I could cope with that. Now it is affecting my upper half in different ways. I am riddled with chronic pain. Can’t take Gabapentin Amytriptylene or Pregablin for other health reasons. Trying Pregabalin in small doses now but not good.

The point.

Two days ago I wanted to try and explain to him how the MS has evolved and how it is affecting me now. Not that I was giving up but that it was different. I think he thinks I just suffer from fatigue!!

Answer. What can I do about it??

When pushed he also said.

I was in danger of letting the MS define me. I talked about it too much. It affects everything I do.

Not to excuse myself when we are with other people. (sometimes when having difficulty with speech I explain that it is the MS, especially to new people).

That although it is hard. I have to understand that most people dont give a damn about my problems or anyone else’s. They have enough of their own.

That when I am too tired to go out with him others don’t understand that I am too tired to be there. They are sick of that excuse. Hard, but there it is.

I am left wounded, hurt and even more alone. Where do I go from here?

Thanks for reading.

Anne x

ps I do feel sometimes that I am losing myself to this damned disease. I can understand a little of that reasoning of his.

#2

Hi Anne,

I feel for you & know exactly where your coming from. It sounds like your condition affects you the same as mine.

i don’t really know how to answer your question, obviously there are lots of things we can’t do anymore or at least struggle with but I just tell people how,how you feel an what I can manage an struggle with, I’m in no way embarrassed at all about my condition, I’m not suggesting you are. We didn’t ask for this but believe we are stronger more determined people to be able to cope.

Your not broken you just have to pace yourself an manage your situations and people should respect that, been tired isn’t an excuse, it’s all part an parcel, if people can’t understand that they are ignorant. I’m very fortunate I have a wonderful understanding partner an great friends an family that support me, I have lost friends along the way, mainly due to their ignorance.

do you drive? Fortunately I still do so in an afternoon load the dogs grad a flask an head down the shore for a well earned kip.

Sound like your partner is burying his head explain to him it help you to talk about things. i don’t know what else to say really except it’s your life live it as best you can, you’ve got to be a bit selfish an put number one first

hope this helps

Allen

#3

Hi Anne, I agree with Allen. Look after number one until you feel right. Others will bombard you with problems & have no interest in how you feel if they need TLC. My advice is treat yourself & try to release with some exercises. Fatigue & being type cast by others as not caring, causes most the problems.

I’m sitting squeezing a stress ball globe. I tell people this world makes me stressed. A beach ball globe has just arrived in the post & now I can kick it about when agitated. Being careful not to break more bones than usual.

The advice of taking more medication & anti depressants does not work for everyone. You know in yourself what to do.

Take care out there & avoid the stress creators.

Best regards Terry

#4

Hello Anne.

I have been frustrated by the lack of understanding a lot of people have shown. I am recently separated from my wife who surprised and disappointed me about her intolerance of my fatigue and depression. I was constantly badgered by my father in law who wanted to convince me that my condition was just a few aches and pains. When I suggested he and others read about the main symptoms on the MS site it’s the usual “I haven’t got time for that.” If you haven’t already done so, it might be an idea to direct your husband in that direction.

Best wishes, Steve.

#5

Hi Anne

I understand exactly what you are saying, I also have a lovely husband, very understanding and supportive, but do we talk about the ms? No, and it can make you feel lonely.

Mind you, I find it really difficult talk about ms, tend to bury my head, and I suppose because I don’t, he doesn’t mention it either, but if I wanted too, I am sure he would. This forum is a godsend to be able to get things off my chest, I so appreciate it.

I wonder if having some CBT might help you, might be worth a try.

Wishing you all the best (((hugs)))

Pam x

#6

Hi Pam

i notice you mentioned trying CBT, I am considering trying this in a vape, or drops under the tongue can you advise me is most effective

thanks

Allen

#7

Hi Allen

I think you have misunderstood me, CBT is cognitive behaviour therapy, I think what you’re referring to is cbd (cannabis based) either taken by vape or oil. Sorry I have no experience of either to advise, perhaps someone else on the forum may know and advise, I also will be interested to know.

Pam x

#8

Thank-you to you all for yr replies. I really appreciate yr time and thoughts. I am going to take time out for me. I have tried everything, leaflets etc to get my husband to read. You can’t make someone do something. I am seeing the doc again about this pain. It is excruciating. Thank-you again. Anne x

#9

I think its hard for them too Anne, before i got ill Lee was already working in a caring role he works as an additional needs manager for Guide dogs for the blind , he’s worked there for more than 20 years but recently took on the additional needs role which involves working with additional disability as well as visually impaired. He says i’m his chief advisor which is kind of him, i do worry about him because it is a heavy load for him having autistic children and now me. I try to give him space, most Fridays is his night playing his guitar with his friend, but sometimes even with the best will in the world he gets tired and we fall out, never for long…we’ve been married for 32 years and iv’e been disabled for 3 and a half of them. I think it takes time to adjust i remember getting very upset once when he said my favourite subject was me ! i felt very hurt but we managed to talk it through…he didn’t mean it, its taken a lot of readjusting to we both needed to grieve this…i always remember my social worker saying you will both grieve you can grieve apart or together but it will be better if you do it together.

Michelle x

1 Like
#10

Thanks Michelle. Very true. Better together than apart. Anne x