Any words would be helpful.......

Everyday living
1

Hi I dont post on here very often but Im feeling so low tonight, tomorrow I hit the big 40, and I feel like rubbish, I have spent the last two days in bed, just extreme fatigue I think, cramps and spasms in my legs and numbness in my face and down my left side, a sharp pain that comes and goes just under my breast and its excruciating I find it hard to breathe when it hits and bizarrley a kind of thrumming, pulsating that goes down my spine, that bit is atchally quite pleasant, I feel like my OH just dosent accept there is something wrong so consequently I lay up here feeling a fraud, if only I could get some energy, my neuro put me on Ammatidine for the fatigue and I havent found it makes any difference I do take co-codamol and gabapentin for pain relief and for the spasms, its pointless trying to go to Docs as there is a three week waiting time to see Doc and Im sure that its probably going to all be notched up to MS. The problem is the longer this goes on the more my OH seems to go downhill himself, ie housework isnt done washing don`t make me laugh etc etc, does my OH do this so it makes me push myself to get up and do things, atchally it just makes me resentful I do usually end up dragging myself about to clean house and restore order,

I never thought this whinging moaning person would be me I thought life began at 40 was really hoping my sex drive would magically reappear, having read some posts on here that dosent seem likely, why does that happen??? I still fancy my other half the mind is willing, but the thought of doing it, isnt sorry to be so blunt, as a woman is there anything I can do about this?? Once upon a time I was a happy bubbly person that never stopped, two jobs, full family life etc, gradually this has slowed down to this, a sheer struggle to get out of bed, what can I do I really am desperate, I dont think Im obsessing about having Ms any replies gratefully recieved, I did have a neuro but my OH started to complain about me being on DMDs and other drugs so I stopped them and only when pain is bad take the drugs that I have, so no longer have neuro,my hubby dosent think I should be taking drugs any drugs at all I do still have very busy ms nurse I think I just son`t know what to do anymore.

2

YES ITS RUBBISH ISNT IT. I SO AGREE WITH YOU. FIGHT IT WE ARE TOGETHER IN THIS ALL OF US WITH MS YOU ARE NOT ALONE.

3

Hi there,

Really sorry you’re feeling so low…I can kind of relate to how your OH is treating you, I’ve just been diagnosed and my OH is ( at the moment ) fairly supportive but he’s the kind of person who gets bored too quickly and I just know that he’s not going to cope very well with any deterioration I most likely will have in time.

Sorry to sound harsh but what I cannot condone is your OH stopping you from taking your dmd’s, this should be your decision and not influenced by him, these dmds could really make things easier for you and him. I can’t understand why he’s complaining. I assume he’s feeling angry that you’re no longer the same “bubbly” person you used to be and I know when my OH doesn’t get his “conjugal rights” then he gets moody and resentful. I feel like you as to sex being absolutely the last thing I feel like indulging in. I do like a nice cuddle though. I guess the nerves which control sex drive are dampned down by the nerve damage which occurs and also if you are in pain, sex is not exactly a priority or remotely enjoyable. Unfortunately, for me, I don’t feel very sexy anymore and I therefore feel that my OH can’t see me as being sexy even though he says he does. Stupid MS takes your confidence away.

You OH actually needs to talk to an ms professional to tell him what having ms is like and he needs to read posts from other msers to see that you are suffering like a whole lot of other people and are not a fraud and that it would be a great help if he could assist with the housework etc.It’s a vicious circle, if you’re having to do all the housework when you’re so tired is only going to exacerbate your fatigue and hence it starts all over again. Does he think you asked to be feeling like this, that you’d give anything to be the person you were before you got this damn disease. If drugs are going to make yours and his life easier why is he so against them?

I feel that you need to get back in touch with your ms nurse or go back to your gp and get him to re - refer you back to a neuro consultant. Your GP must be able to prescribe something else for you fatigue. I’m sure none of us ( including myself ) like to take all these drugs but it’s plain and simple, we have to take them to feel human again and you sound like you’re getting a relapse and by stopping your dmd,s you will possibly have more relapses more frequently.

I hope that you will feel more upbeat soon.

You just keep resting for now.

Take care

Anne-Marie

4

My first thought was, why does your “OH” think you shouldn’t be taking any drugs? He does understand whats wrong? it’s very easy to forget when you look at us sometimes, we don’t have a hump to remind people.

Secondly, I was going to say you need to tell your OH that you need help, if he is leaving you to do the housework and you are struggling, then tell him. It’s not the easiest thing to admit to others that you are no longer capable, it’s often part of the reason people don’t notice…because you just figure out a way to manage on your own.

It’s so strange how we find it easier to tell strangers of our problems but the people who really matter, we shy away from. Consider how things are between you and your partner, you should both be aware that you and your partner can both become bad tempered and resentful of your illness.

Often this can lead to unintentional stress on your relationship, again communication is important, try and give him time to have a bit of a moan to you and equally, make sure you moan back when you both feel a bit irritable about things. It’s more important you can bitch and moan with each other than you realise, supressing frustration really doesn’t help because it builds up and manifests as anger at unreasonable things. It’s also important to realise during the afforementioned bitching and moaning that neither of you take offense. Just let it out, and talk to each other about it.

Like how my partner forever keeps putting the bread knife in the carving knife spot, leading to me having to pull out two knives to cut the bread! Oooh it drives me nuts I tell ya!

Sex, such a complicated thing, there is no magic fix it pill but I will say forcing yourself to try is important. There are plenty of toys, kinks and fun things you can do together, or alone! Put your makeup on, slip into something you’ll want to remove soon and beg your man to take you. I won’t say any more than that in case I embarrass you but if you want some ideas I am a horrid perv so just pm me.

We wake up feeling tired before we even get up, we see everything as equivalent to climbing everest and it does sap our enthusiasm and motivation to keep going. If we give in though, if we just stop trying, nobody is going to fix it for us.

Take Care babe, keep fightin!

xx

5

Hi, sorry you’re feeling so rubbish. Just wanted to say quickly that you’re not a fraud. If it feels like your OH doesn’t think there’s anything wrong with you, I suspect actually it’s that doesn’t want to admit that there is something wrong with someone he cares about. We never want our loved ones to suffer, so he’s probably struggling to come to terms with it, and may be in some form of denial.

And also on a practical note, it might be worth contacting your social services department, as it’s possible you may qualify for some care assistance. Having someone around to help with the housework, even if it’s just an hour or two a week, could really help. Another practical tip which might help is for whoever does the cooking to cook up a huge pot of something like a chilli, bolognaise or curry etc, and freeze the extra portions. Then for your dinner it’s just a simple case of get something out of the freezer and just cook some rice or pasta.

Dan

6

Maybe some gentle body massages and oils would gradually help to reawaken things.

7

Sorry that you are having a rubbish time at the mo and I would echo what the other replies say. Do contact your MS nurse and get some advice and see if you are still eligible for DMDs and perhaps consider trying a different one to the one you were on before.

Don’t feel guilty for not doing any housework etc… whilst you are feeling bad,it is important that you rest.

Hope you feel better for your birthday tomorrow