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thank you

I havent been on for 2 weeks since i posted about being diagonsed with ms, i lost my password and also been busy and on and off ill. I now cant find my post so thought i had better start a new post. I want to thank everyone for being so supportive and giving me such great advice it has really helped.

The news of me having ms is sinking in slowly think some of my friends and family are having a harder time than me. I think my hubby isnt taking it as well as i thought because he wont even read the information ive got, he keeps making exuces saying he will read it later but still hasnt.

I am only 28 and have 2 young children (aged 6 and 4) and i will not let ms rule my life like it has done in the over 4 years to get a diagonise. As soon as i start the treatment i will fight this.

Today im stuggling a bit i cant seem to get an energy i woke up at 12 and then had to have a nap at 2, im still really tired now but trying so hard to fight it

Hi

You have lots to deal with so be gentle with yourself and your husband. Leave the rest to themselves for the time being.

Why not start taking control before any treatment?

As far as energy, that is undoubtely MS fatigue. Do your best to take breaks frequently (hard with young 'uns, I know), try not to go past your fatigue tipping point, that is the activity point which you can go to without horrendous repercussions.

Take one day at a time and you will discover what works best for you. It takes time but you will do fine :slight_smile: The forum is a wealth of information from folks who know what you are going through and will offer support as and when you need it.

Best to you

Tu

Getting a diagnosis is often compared to suffering a bereavement because we are grieving for the loss of who we thought we were, who we thought we would become. It is also something that affects friends and family too, not just the patient.

Getting to grips with it involves different stages of grief and although the final stage (acceptance) is the same for everyone, there is no fixed route through the stages to get there: they can happen in any order. And that means that what’s right for one person at any one time may be completely wrong for another.

So maybe try just leave the information lying around: your hubby will pick it up one day, probably when you aren’t looking! And then, one day, he might be ready to talk about his own fears and listen to yours.

Give him time. Give yourself time. You’ll get there in the end.

In the meantime, please don’t try and fight the fatigue head on. There are booklets about fatigue on here and on the MS Trust website that might give you some good ideas about how to avoid and manage your fatigue, but if your body needs rest, then there is little point in fighting it - very often all it does is make it worse! For example, learning to take a 10 minute nap/rest before you are get bad might prevent crashing out for hours because you’ve become exhausted. Definitely better to pick battles that you can win!

Karen x

Hi ya

Ditto to what Tulip and Karen have both said.

For now, rest up as much as you can. When you do start to feel a bit better don’t then go mad and try to get all the chores etc done in the first day - you’ll end up back at square one. Pace yourself, do only the necessary stuff. Leave the rest.

Your hubby’s been hit just as much by your diagnosis as you have, just in a different way. If he won’t read the information you have then have you tried persuading him to read it with you. Maybe go through it a bit at a time together?

Definitely have a look at the fatigue booklet available on here (and the ms trust website). There is also one on how to explain ms to family and friends too which might be beneficial.

In terms of getting your head round your diagnosis, it’s early days. You probably will be up and down emotionally - as will your hubby. Both of you go easy on yourselves, it’s a lot to get used too so just take one day at a time. Don’t overload on too much onformation at once either.

One baby step at a time.

Debbie xx

thank you all, i do tend to over do it when i have energry and less pain, after reading your replies i think i might know what caused me to be so tired yesterday. on thursday i was having a fairly good day, i wasnt in to much pain with my back (ive damaged my back due to falls down the stairs because of the ms) i didnt need my stick so me,hubby and my 2 boys decided to walk to my mums (30min walk and hilly) so we walked there and then i did some bits for my mum (shes off sick atm with her back) my hubby was doing her ironing but for some reason struggled with the trousers so i took over, that started to really hurt me but i carried on, i then had to walk back from my mums and i didnt rest much when i got home.

my hubby started to read the info last night but stopped, he told me hes scared. so i think that i might take up the suggestion to read it together.

Hi, I have had ms for over 30 years but not actually dx until November 2011. I tried getting my o/h to read the info and he said I’ll read it later. So I just left it lying around. There is a local ms group near me and I wanted to go and I asked my o/h to come with me as I wanted his support in meeting others with ms. Last week we did just that and he has agreed to go again with me. It’s harder for people who don’t and never will understand the pain and all the other things that go on with ms, so be patient and your hubby will listen and ask questions when he can accept that you have got it. Hope this helps.#

Janet

x

Hi ya Serendipity,

Learning to pace yourself is quite difficult to do especially if you’re a naturally busy bee type of person but you will get there, just give yourself a bit of time. I’m still struggling with it now…I think most of us do.

Your hubby starting to read the info you have is a good start. You’re both bound to be scared - it’s a scary business - the main thing about ms though is that it’s incredibly variable not just from one person to the next but also for each of us as individuals. So being that we all have a tendency to compare ourselves with others, it’s important to remember that what may happen to one person may never happen to another.

It’s a huge learing curve and an emotional rollercoaster but after a while, once you’ve both adjusted to the news things will start to become easier - hard as that may be to believe at the moment.

PM me anytime

Debbie xx

thank u ladies ur advice has really helped and i have been reading up on the fatigue side of things, also the newly diagonsed booklet was open on my hubbies desk earlier so think hes been reading even more of it.

hello

my husband didnt want to read the info, didnt want to accept the diagnosis.

but, unknown to me, he started asking round about ms. then one of the blokes at work said that his wife has it. my hubby then asked him how bad it gets and thankfully the other chap told him that everybody’s ms is different.

he surprises me by how well informed he is, he must be googling like mad

i’ve learned a lot about him since my dx. he always wants to fix whatever is broken and that took me a while to come to terms with. he paid for me to have the ccsvi procedure and was made up when i started walking better.

just saying that i hadn’t given enough thought to the efffects of my ms on him

good luck hun

carole xxxxxxx

Carole i know what u mean it does really affect ur partner, my hubby was a full time carer for his mum when she was alive as she had cancer and now hes a carer for me, i feel so guilty and i even said to him i wouldnt blame u if u wanted to leave me.