Forum

Denial

Hi everyone, this is the first time Iv used this so excuse clumsy message. I hv ppms and for years found the only way I could cope was to ignore it as best I could. Well as I now use a wheelchair pretty much all the time, reality has hit! I could do with some help emotionally and practical

Hi Magpie and welcome to the board…

Well hon you’ve come to the right place for support. We are only a little gang but we have a big heart.

Actually I don’t think denial is a bad way to go… while you can… but yes the time comes when reality hits.

Are you able to walk at all? I ask because I find a scooter can give you a bit more freedom… but of course you have to be able to get on and off it… and park it outside smaller shops and cafes.

Tell us what practical help you need hon. Are you on all the right benefits? What’s your housing like? Have you had any aids and adaptations put in? We have a wealth of experience between us so let us know.

On emotional side… personally I find the ‘one day at a time’ approach works. I’ve managed (after a few years of practice!) to live very much in the moment and just decide things on a daily basis. Let tomorrow look after itself.

I know a lot of the professional advice is to ‘pace’ so that you keep a bit of energy in the bank… but I don’t really go with that (too bloody boring!!!). If I’m having a good day I go with it… make hay while the sun shines!.. and if it means a day (or a few days) in bed, well so be it.

Are you doing ok in this heat? I’m living like a mole LOL… blinds down and fan on!

Come on and tell us more about yourself. We are all here for each other. The one advantage of having PPMS is being here and knowing you’re amongst friends who really understand what it’s like.

Are you on high-dose Vitamin D3? Just ask if you want to know more.

You can tell us anything Magpie… absolutely nothing is taboo!

Take care, keep cool, and looking forward to getting to know you,

Pat xx

Hi thank you for your reply. I live with my husband, who is now my carer. I have a scooter which has been great. I walk around the house using frame, sticks and anything Solid I can grab…but most of the time I use a w/c as I get tired and joints hurt. I think I need help more to accept things. My husband recently retired and has found his change in role to being a carer hard. I can get in and out of bed, use the toilet, get dressed and undressed shower, he does help me sometimes to get up from shower chair. in fact I thought I was doing ok. When I’m tired I sometimes need a bit of help getting up but its not all the time. However I can’t do much in the house, we hv just moved to a bungalow but it needs to be adapted which we can do, but until then I’m no help and he’s stressed, understandably. We have got a carers assessment booked which I have found a bit difficult to swallow as I thought I was doing ok. So I am now trying to come to terms with it but feeling, well I’m not sure how I feel. I guess I didn’t think I was at this stage yet …denial…

Hi Magpie

Welcome to the forum. I’m also new, I only got a proper diagnosis of PPMS a week ago so I can almost imagine what you’re going through. As Pat said this is a lovely forum and everyone is so welcoming, accepting and all bring different advice and ways of managing both physical and emotional aspects of the illness. And she meant it when she said that no subject is taboo. If you aren’t sure then have a look through other posts.

Any odd symptom you may have is probably felt by many others and so inspiring to hear different ways to manage them. Nobody here is just quoting what they learnt at uni but have day to day experience.

It sounds very much like you have a lot going on in your life at the moment. It’s a well known fact that moving house and retirement are in the top ten most stressful experiences you get and you’re coping with both of them together. On top of your ms and the heat which might also be worsening your symptoms you need to accept all the help and support available.

The only thing I can say is what advice I received on this forum, to rest, eat sensibly, and take care of yourself. Hope things start to improve for you.

Cath x

Hi Magpie

Welcome to the forum. I’m also new, I only got a proper diagnosis of PPMS a week ago so I can almost imagine what you’re going through. As Pat said this is a lovely forum and everyone is so welcoming, accepting and all bring different advice and ways of managing both physical and emotional aspects of the illness. And she meant it when she said that no subject is taboo. If you aren’t sure then have a look through other posts.

Any odd symptom you may have is probably felt by many others and so inspiring to hear different ways to manage them. Nobody here is just quoting what they learnt at uni but have day to day experience.

It sounds very much like you have a lot going on in your life at the moment. It’s a well known fact that moving house and retirement are in the top ten most stressful experiences you get and you’re coping with both of them together. On top of your ms and the heat which might also be worsening your symptoms you need to accept all the help and support available.

The only thing I can say is what advice I received on this forum, to rest, eat sensibly, and take care of yourself. Hope things start to improve for you.

Cath x

Hi Magpie

Welcome to the forum. I’m also new, I only got a proper diagnosis of PPMS a week ago so I can almost imagine what you’re going through. As Pat said this is a lovely forum and everyone is so welcoming, accepting and all bring different advice and ways of managing both physical and emotional aspects of the illness. And she meant it when she said that no subject is taboo. If you aren’t sure then have a look through other posts.

Any odd symptom you may have is probably felt by many others and so inspiring to hear different ways to manage them. Nobody here is just quoting what they learnt at uni but have day to day experience.

It sounds very much like you have a lot going on in your life at the moment. It’s a well known fact that moving house and retirement are in the top ten most stressful experiences you get and you’re coping with both of them together. On top of your ms and the heat which might also be worsening your symptoms you need to accept all the help and support available.

The only thing I can say is what advice I received on this forum, to rest, eat sensibly, and take care of yourself. Hope things start to improve for you.

Cath x

Sorry about that it wouldn’t send so I tried to cancel and re post. It obviously didn’t cancel though just sent all my attempts.

Hi Magpie and welcome to the club :slight_smile:

The support from the people here has helped me immensely on the emotional side of things.

I was diagnosed with MS about 2.5 months ago and felt like someone had pulled the rug out from under me (quite literally at times lol) and last week I was told likely PPMS so adjusting to that idea now… still hoping tho.

Take care and this seems like a really good place to ask questions, offload, vent, or whatever, as everyone here is in a similar boat so understands what goes with it and what’s it’s like to stand in your shoes.

Sonia x

Hi Magpie, Welcome to our little world, I’m sorry you’re having such a rough time at the moment but as Cath said…moving and your husband retiring on top of having MS…it’s no wonder your suffering. The emotional side is so hard isn’t it.? I really hope that you will benefit as much as I have from the friendship, support and understanding. There’s nothing quite like reading posts where you just know the person feels just like do. I so agree with Pat …make the most if the good days however rare they are…I’ve come to the conclusion that , for me at least, it’s simply not possible to ‘bank’ energy. I have tried it and it certainly doesn’t guarantee that a good day will follow. Good Luck, take care, Nina x

Hi Magie, im reletivly new on here too and find it a way of opening up a bit. I live my life day to day and just try and get on with things the best i can. Im finding it harder to get changed and move around & everything becomes so tiring, a hassle and the CBA sets in. Im still working so have to get up in the mornings as i can not afford to live without working. I live alone so have to do everything myself which does become a pain in the arse with things like cleaning, cooking, general didy and even to put the washing out… and im only 42 !!

I dont think about my PPMS, i just think im getting old and blame my symptoms on that rather than accept it and let it rule my life. My kids think im a superhero as ive got an ‘Osis’. The worst thing for me is that i hide in my house when im not working as im safer there. So all i have in my life at the moment is my work, my home and my kids on the weekend… That has now become my life, and a happy one.

Hi Magpie, Welcome to the forum - as Pat says, denial can be a good coping mechanism but unfortunately reality makes sure that you can’t ignore the diagnosis indefinitely. It is a tough thing to deal with - my mobility has deteriorated a lot in the last year and my hubby now has to work from home to help me out and to do the majority of the cooking, cleaning etc which he has found very hard. I feel quite useless as a wife and mother sometimes(I have 4 sons) but you keep trucking on, don’t you? I recently had a nasty stomach bug which made me almost completely disabled for a day - it gave me a scary view of what life may become like. We have to take it a day at a time though and try to keep positive. Obviously, this is not always easy. I hope you will stay in touch with us - this forum is a great support. We all rely on each other to get through those bad days and we do have a laugh! Teresa xx

In response to Dave’s wonderful post above, if there is any ‘advantage’ to PPMS (and very hard to use that word in connection with this damned desease) I will say it has taught me to appreciate and enjoy the ‘small stuff’.

I no longer strive for more money, bigger and better home, expensive holidays, passionate love life… or higher status.

It took me a while to get here… but living in the ‘now’ and just enjoying what I have is enough for me.

I don’t want to get all Californian ‘new age’ about it (God forbid!) but it’s something I’m glad I’ve learnt. If I can have a nice easy day pottering around at home, pain under control, I’m content. I don’t want more.

Though to be honest I’m not sure I could have handled it all quite so well if this had hit me when I was younger.

Pat x

I hwas trying to get to grips with the smilies but it all went … up and I think the message was sent however if I have jjust wiped it this will make no sence at all! I’m not mad honest

Pat you have just really hit the nail on the head. I’ve also moved the goalposts. When they told me the damage was permanent I decided to live each day as it comes and set my aims at doing something every day. Sometimes it can be housework or paperwork or hobbies, on bad days it can be just to make someone smile. I’m also single and despite the diagnosis I’m more content than I can ever remember being.

Ok so I did wipe it. Thank you so much everyone for your messages, it helps knowing there are people who really understand. All of you have helped me put things in perspective. I know its pointless trying to fight the inevitable I shall be kinder to myself and accept whats happening. That’s not to say I will give up

however This pc is driving me mad! could be the heat

Hi, accepting our lot is a difficult one…but it doesnt mean we have given in.

Far from that, i love my life and all the people in it.including my friends here.

For several years, I was diagnosed with PPMS, so I did a lot of research on it.

Then last year MS was finally ruled out and my current diagnosis is spastic paraporesis/cause unknown. it could turn out to be genetic.

I was going to leave this forum, but didnt really want to, as so many friends urged me to stay.

Back to you hun…I am glad you can still do some things for yourself, as that gives us independence.

My hubby was my sole carer too, for 11 years.

Now we have 3 other carers coming in to help. This gives hubby time to himself, as he isnt a well man.

Do you think that might be something you would like to think about at some point? I can give you some advice on the procedure, if you`d like.

Keep coming here for support, advice and a laff too.

luv Pollx

Hi Magpie,

I have been away for a few days and only just seen your post.

Coming on this forum will be such a help to you as we all

understand.

I am wholeheartedly with you on the denial thing, but, unfortunately,

that can only last as long as your ms allows it to. I remember years

ago thinking this “thing” will not beat me, not talking about it and trying

desperately to hide it, but I had to accept it when it got to a certain point.

I am a wheelchair user and my hubby is my carer, but life is still good,

different to what we had planned but still very worthwhile.

One day at a time, take care

Pam x

Both my husband and myself are finding it hard adjusting to our new roles he carer me being cared for. After so much chage, we hv also moved its a miracle we still speak! I suppose this is helped by giving ourselves time.