feeling quite unwell

Primary progressive MS
1

I am spending 90% of my life lying in bed the last 5 weeks, luckily its in the dining room amongst all the hustle and bustle. I have numb buttocks constantly and suffer a frozen back which only lasts for 5 mins once a day but is worrying me, my spasms are happening every time I move and they are so painful, I have headaches, and shoulder &neck pain on the opposite side to my spasms, I’m having really bad abdomen pain on my right side, I’m constantly tired but can’t sleep. Can’t stand or walk for more than a few minutes before my back and legs give way.

I saw the consultant on Xmas eve, who recommended I now take 50mg of baclofen, I have a foot brace which helps to lift my drop foot but my back won’t allow me to walk. Urine sample taken but received a call from MS nurse this a.m that it needs repeating, so I need to get up tomorrow before 8 am get to g.p surgery do my sample and request an appt about the pain in my abdomen. I was very close to going to A&E last night due to the pain but didn’t have the energy.

My house is a mess no one is doing any real cleaning up and its driving me mad, I’m contacting S.Services after the holidays to get some help. Had a massive argument with boyfriend again about my kids so he’s gone home, I love having everyone around me but the stress of it all is too much. I’ve tried doing some chores but its ended up in me falling or banging into the furniture resulting in several bruises so I’m not doing it anymore.

I’m taking 150 mg of pregablin & paracetamol its making me foggy but isn’t fully killing my pains.

Love to be able to let it all out on here.

Pauline

2

Hi Pauline,

sorry to hear you having a rough time of it, i spend a lot of time resting in bed,i dont sleep,i just have to rest such a lot,i keep getting up and doing jobs when able,but i am like you and can only be up on my feet for 15 minutes than i have to sit before i fall, this time of year allways makes me feel quite ill, it always has done,thats why i dislike winter so much, last winter wasnt as bad as this one,its been a bad one for me since October,i think also the stress you have been having with your partner is adding to it too,rows are no good for anyone,more so with us with ms…

try to rest as much as you can in peace and quiet.i take myself off to my bedroom its my sanctuary,i just close my door on the world when i want to,it does help me…we have just taken the tree down and the decorations and i feel better for that too,now i can start looking forward to my favourite time of year the spring, my miniture daffodils are starting to come through in the rockery,that always lifts me lol…coming on here and talking to this lovely lot helps such a lot too doesnt it…

J x

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Hi Pauline

Sorry to hear things are difficult for you, try to rest as much as you can ((((hugs))))

The last thing you need are arguments, causing so much stress, does your partner not take your ms into consideration? Try getting him to read the booklets from the ms society, might be worth a try.

Definitely get in touch with S.S adult care team immediately after new year, and don’t hold back, let them know just how you are struggling. Also if you have an OT get in touch with them, if you don’t have one, ask your gp to refer you.

Wishing you all the best for 2015.

Pam x

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Oh Pauline it all does sound a bit of a nightmare.

Baclofen? How are you finding it? It should help with the spasms. I only take it when spasms are bad (luckily I don’t have them all the time). Took one today after terrible back spasm and it has helped. Still can barely move without pain but it’s definitely better than it was.

Are you getting all the benefits you should? You should be getting top level DLA or PIP and ESA. Can you afford a cleaner out of your benefits? And Pam’s right, the SS adult care team will be able to tell you what help you’re entitled to. Get onto that on Monday.

If you can afford a cleaner (hourly rate varies but it’s usually around £7.50 an hour here in London) then get onto that on Monday. Local paper would be a good place to start. Even two hours a week would make a huge difference. It’s hard for us to remember how much a none-MS person can do in two hours!

How old are your children? Sounds to me as if they should be helping out a bit. I know that’s easier said than done. Have you someone who could talk to them for you?

Sending you lots of big ((((((((((((((HUGS)))))))))))))) Pauline. I know it’s hard when the place is in a mess and you want to clear up but try and remember that it’s not going anywhere. Leave it for now. Are you able to tidy up your bedroom a bit and stay in there? Turn a blind eye to the rest of it… just for now until you get help?

Thinking of you hon. Hang on in there. Wish I could wave a magic wand.

Pat xx

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Thanks for your hugs i needed them, my girls are 21, they don’t have any energy or desire to live in a clean home, they tell me they’ve cleaned but they havent , I’m tired of endlessly repeating myself to them. They are very good at helping me dress and shower, cook etc so I kinda count my blessings for what they do for me. I am waiting to move into level access housing and have told them they need to make their own way in life , I plan on only having my 13 yr old with me when I do but they and my eldest son all want to stay with me this would be o.k if they would clean their mess I tell them endlessly.

I do have an O.T she has supported my housing application and provided me with some equipment.my bedroom is in the open plan living area so things tend to overspill in here.

My partner is battling constantly when he is here with the kids about doing more housework but he becomes arrogant and verbally abusive which puts everyone’s back up then no one does anything including him, its a case of if they don’t I won’t then the atmosphere is so unpleasant. I’m red in the face with pleading with everyone to work together.

I’ve told them all I’m going to get a cleaner after the holidays but he /she won’t be

Picking up after anyone but me and my youngest. My partner is horrified about this and thinks I should make the kids clean, tell me how! How you make anyone do what they don’t want to do.

Eldest has Aspergus one of the girls is being tested for MS and is suffering fatigue,the youngest has autism he

( partner) thinks I make too many excuses for them. Maybe I do!

I am on the maximum pip so yes this will pay for a cleaner & maybe some care if I carry on struggling.

I’ve now got 24hr helpline emergency.pendant only costing £3 week I tend to fall when kids are upstairs with headphones on or out & a key safe for the door, everyone goes out without their keys.I’ve done all this through my employer as I work in sheltered housing ( or did do).

I think my partner is now realising my MS could be something he cannot live with l’ve told him he is free to go he’s not really accepted my illness he says he’s read the info but his actions don’t reflect any knowledge or understanding he stresses me so much, I love him dearly but he see’s the world black and white and doesn’t go with the changes.

Again thanks for your support I appreciate you all greatly.

Pauline xx

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So sorry you’re having such a rotten time Pauline. Hope the new year brings you some solutions.

thinking of you and sending hugs,

Nina x

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Hi again Pauline, very hard to know what would be best. I can understand how difficult it is with the children and with their various issues.

It’s good they help you shower etc and that they cook. If you could get the housework under control it would be so great. The trouble is, with a cleaner, someone still has to tidy up as of course the cleaner won’t know where things are meant to go, which clothes need washing etc.

You could propose a deal with the children… who are actually adults… say that you are prepared to pay for a cleaner but explain that a cleaner cannot tidy up. Cleaners come to clean not to tidy. So say you will pay for a cleaner but each week before the cleaner comes they have to tidy up.

As for the boyfriend, I’m afraid I’m very hard-hearted. I would say to ditch him. You’ve got enough problems and he’s just adding to them. But as I say I’m hard-hearted so go ahead and ignore me if you like.

Really hope you get an offer of housing soon… although surely it won’t be big enough for the adult children as well?

Stay strong. Remember that housework can be sorted somehow… and that it’s a problem that seems bigger than it is because you are so unwell.

Sending you best wishes for 2015… hopefully a year that will see good, positive changes for you.

Love Pat xx

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Hi Pauline

I can see why you are stressed, having a cleaner will help, so that’s a good move, also if they can sort your housing soon, that will hopefully make life easier.

I am afraid to say I agree with Pat when it comes to your partner, I would seriously think about telling him to sling his hook, you do not need the aggrevation that he causes.

I so hope 2015 will be better for you ((((hugs))))

Pam x

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