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Sorry :(w

Sorry is something I say all the time, feeling very low today. I’ve just had steroids intravenously, I don’t react very well after, I am in pain, the whole top half of me, very painful to touch (is this the nerve endings?) they feel like they are on fire!

I do have a loving caring family, but they have no idea. None of them will think, mum’s not feeling good today, I’ll get blah blah out for dinner…no, they wait till 5pm and asked, right what shall we do for dinner (I don’t care!) Or wow, the washing is piling up, I’ll put some on. I don’t ask them for anything either, as I hate to feel a burden. So I take myself to bed. This morning hubby says, how are you? I say, in alot of pain, he says I wasn’t being funny, was just asking!!! So I say, sorry, I’m not sure what you mean, you asked, I told you. Now he’s gone to work with the hump, and I’m left feeling shit, is it me??? So in pain, got the wash on, preparing something to go in slow cooker (crying because I really hurt inside and out) The house is happy when they think I’m ok, otherwise it seems to fall apart, so I soldier on, this is what brings my attacks on, I’m sure, always pushing myself to make others feel better. It’s exhausting. Then I worry sick over the future, what happens if and when it gets worse. I feel so isolated

Sorry for going on, feel a little better writing it down x

Hi shellie Don’t apologise !! It is €$¥# at times !! And especially when you feel unsupported just when you need it. I getcha completely. I know that pushing myself makes everything worse and I try not to but sometimes there’s just so much to be done and I feel bad not doing it, especially as I’m not at work and been off sick for 6months. It kinda feels like I’m being lazy not doing everyday household chores but I just, physically can’t. (((((((()))))))))))) from me to you Xx

Mrs H me too, I haven’t been at work since September, I think I’m hoping for them to ill health, or pay me off really, I honestly don’t think I can cope anymore, and that in itself is depressing, I work in a school, and on the positive, since not being there I have had no infections, which were a regular occurrance! I so get what you mean. I don’t know if they think I’m lazy, but that is exactly how I feel.

Thank God for this Forum

Lots of love to you xxxxxx

Hi shellie I have a very stressful job and cannot, now, imagine going back and inflicting that level of stress on myself. When I was first diagnosed, I was literally chomping at the bit to get back to work but in those days, I don’t think I accepted the diagnosis and thought that someone would be along shortly to tell me it was a joke!! I saw a new neuro last week and finally got a supportive shoulder, he told me that the damage is in my brain stem and that it’s location is unlucky for me. I asked him outright if I am going to get any better and he said no. The reality has set in big time !! A couple of days later my manager and HR came out. Medical retirement was mentioned, so I’ll just have to see what happens. I know for an absolute, 100% fact that my lovely, fantastic, new hubby does not think I’m lazy and in fact thinks I try too much but I feel rubbish about the amount of stuff that I want to do, that I used to do with no problems and now simply can’t. Xx

mrs h, you have just described my life to a tee. please try not to feel down and beat yourself up over it. keeping up the brave face is so hard, i think sometimes you have to let it slip so others expectations aren’t so high and they can muck in and help.

take care xxx

I only joined this group 2 months ago, having had MS for 17 yrs and in denial the whole time. You think your alone, and then on here, your life, your story, everyone else has experienced. I hate to feel useless, but so get what you mean, I do need help, I didn’t ask for this, but then I feel my family didn’t ask for this either. It’s like grief in a weird way? I only spoke to my MS nurse for the 1st time 2 months ago too (so in denial) but that was due to people on here telling me to get things sorted, as I haven’t had a let up in 2yrs of symptons, they haven’t gone away, but I thought if I ignored them, they would. I’m having a MRI in March, see consultant in May, I don’t even tell him the truth, but now know that I must, even for my own sanity x

You kinda told yourself the truth and came to your own conclusions there !! Sometimes, the little, niggly voices inside our heads are right !! Xx

I posted a week ago about my dread about going away on a skiing holiday - actually it was fine. I had a wheelchair to get through the airport, which I absolutely hated going out - first time I’d ever used one and I just felt like a non-person - as if no-one was seeing me or speaking to me, just seeing the chair. But on the way back, there were several people in wheelchairs (skiing injuries) and so I felt fine. I know that’s stupid.

But what I was really posting to say was - the bad bit was once we got home. We’d had a new boiler fitted while we were away and the stupid fitter had left it off (tho told to turn it on). So the house was at 10 degrees when we got back and took until the middle of the night to warm up. I’m worse in the cold. And my husband did empty the suitcases - but I’ve got a pile of washing taller than me and no fresh fruit or veg in the house. Shouted at the children this morning and then felt bad - they do so much more than children without a disabled parent would do but they don’t do enough. Just writing this is making me cry - sorry for them and myself. I truly hate this disease.

Shellie This is exactly me I’ve been dx 18* yrs and now SPMS life is such a struggle but I too try and carry on regardless which is killing me, no one has a clue what it’s like I look good on the outside so therefore I must be good on the inside too!! If only they knew. Your not alone sending you cyber ((((((HUGS)))))) xxx

No, it’s not stupid and you every right to get frustrated and upset. Those moments are like a psychological steam release valve !! And tomorrow is another day. Just get through the rest of today as best you can and start afresh tomorrow. Write today off…watch a cheesy film, eat chocolate and rest. (((((())))))) from me to you Xx

Hi Shellie, I know I have told you on here before but how you describe things is me to a tee. I too feel very down and depressed at the moment and after speaking recently to all the other lovely people on here I saw my ms nurse and she suggested I had counselling with a lady at our ms resource centre. I plucked up the courage and made an appointment which should have been last Friday afternoon but had a massive panic attack on Friday morning so my husband had to cancel it. I know I shouldn’t feel like this as I have a wonderful family, my husband booked us a surprise holiday to cyprus last week to cheer me up which I should be looking forward to but all I can think about is all the problems at the airport with wheelchair etc and any problems I might have while abroad with my catheter. Now I am sitting here with tears rolling down my cheeks because the estate agent has just phoned to say they have a buyer for our house so will now have all the stress of that. I don’t know what the answer is I really don’t. The only thing that is keeping me sane is being able to talk to all the lovely understanding people on here. So big hugs from me and hopefully things will improve soon. Anne x.

Shellie, feeling a burden is one thing I don’t want to be and I tried to cook a meal the other day and ended up burning myself on the oven! Delegation is something that you have to do but if you don’t think you can, do small things in moderation, not all at once.

hi shellie and gang, i can relate to all you’ve just said. just come out of MY laundry room after not being in there since friday (not wanted to go in there over the weekend) there is so much washing to do that i just stood there crying. Thing is there are 3 other adults in the house but can they do it, no they b****y cant it seems. dont get me wrong, they do help more than some kids do in a family, even my 8 year old does things (my other 2 kids are 21 and 17) but i still feel that i have the bulk of the housework and that i have to put a brave face on and just get on with it.

off to get my splints soon, wish me luck.

Lisa

Good luck…xx

Thank you Mrs H, off to get ready, see you all later

Lisa

Thank you all so much, I can never put into words, to non msers how I feel, its so good to unburden on here, and not be judged, as you all have, at one point or another, been there, done that, blah, blah, blah. This support group is wonderful, and I wish you all the best. Thank you again xxx

Hi hun, sorry for butting in here, but i just wanted to say something about your hol.

Did the chance come up for you to mention your next family hol? Perhaps it wasnt the right time, but when the subject is discussed, I hope you will say Can we do something that i can enjoy and participate in, please? Then they all might realise how you feel, eh?

luv Pollx

Hi Shellie, I think it is time for you to take early retirement on ill health. Time to look after number 1 for a change. I know, mums aren`t supposed to get ill, mums are supposed to filled with endless strength to make sure everyone else has everything they need. This is also the way we see ourselves, most of the time.

We are multi-taskers, wearing several hats at the same time, mummies for cuddles, cooks for the best meals, cleaners for a tidy home, romantics for the bedroom, nurses when anyone is poorly, plus a hundred other things.

It was always the same in our household…then mum did get ill…but I kept up a normal front, so as not to upset anyone.

it took a few years before my lot realised just how ill i was…even then, I got very little help from the kids. Hubby was good, I must say…most of the time.

But now theres just the 2 of us and if i have a day in bed, washing gets left on the airer, other stuff is left too. I pretend its ok, but it isnt.

Time for you to speak out and ask for help. I know, it`s hard hun.

luv Pollx

Shellie et al. This whole MS thing is CR*** and am expeiriencing a lot of what you guys are going through. I dont think anyone really ubderstands whgat this condition is like unless you have it. I try to overcome things and give myself a kick but now i have weekness in both legs and walking is becomming difficult it is hard to look on the right side. I have been blessed with two conditions Nerufibramatosis which i was born with and now i have been gifted MS and yes i am taking the preferbial. But im trying not to be self obssed so ill move on now,

Den, you don’t have t o move on anywhere, it does you good to just think of you sometimes. People on here are so lovely, I don’t feel as isolated anymore x