Somewhat deflated

Oh my I have really started something with this thread. Anyway my daughter hasn’t mentioned it again so hopefully that’s the end of it for now,

Quite why she would want us to visit I don’t know as she is nearly finished her course and up to her eyes in exams. She was also dx with ulcerated colitis a few years ago and has just recovered from a relapse brought on by stress of the exams. It was only a couple of weeks ago that she was soooo tired! and nobody understood. Ironic or what?

Mags xx

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You are so right Pat,i have lived with MS for 24 years now, and when i was first diagnosed i could fight it, and fight it i did, i could do most things if i paced myself, for a lot of years,i used to push myself a lot, too much at times,but i always ended up paying for it… BUT then i had a nasty brain stem relapse in 2006 that left me where i could hardly do anything much at all,people just didnt GET it,they just told me i should fight it more, i found it really insulting,but then thought to myself, these people have not got a clue, i am proud of the way i have handled this monster and i wont be made to feel bad because i cant get up out of bed,its a good day when i can get to the toilet and a really good day if i manage a shower.

J x

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I have yet to come across anyone with MS who doesn’t “make an effort”, who doesn’t “help themselves” as much as they are able, who doesn’t do all they can to keep doing the things they used to love doing, who doesn’t do all they can to keep the skills they have acquired in their life, to keep the abilities so many people take for granted.

Of course there are always those who are worse off than ourselves and we all know that. That doesn’t mean that we have to drive ourselves into the ground in an effort to meet others’ unrealistic and badly informed expectations.

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Mags only you know what you can and can’t manage.

Anthony I was a nurse and even though I’d heard and read all about fatigue I never understood just how debilitating it can be. For a long time I thought I understood it, how flat my batteries were after a shower, physical exertion, or an outing. Only recently have I experienced what I now realise ms fatigue can be.

When you wake up in the morning still feeling like hell, when even sitting up to try to get out of bed is a real effort and then by the time I’ve got my gown on, made my way down what feels like a mountain of stairs, and switched the kettle on I’ve burst into tears as the wait for the water to boil so I can sit down and take my meds feels like hours rather than minutes and standing waiting is torture.

I also believe that there are a lot of people out there much worse than me, my dad who has end stage MND is among them. I am determined to stay as active as I can and this stubbornness is the only reason I’m not in a wheelchair after damaging my neck, but I also know how hard it is when people make you feel like you’re lazy, pathetic or looking for pity. I hope you never feel the extreme fatigue that ms can cause, but please try to understand how it can feel for others.

I’m not trying to be rude or upset you, I’m also just trying to explain how difficult life can be. Even keeping my head up while watching the telly tonight is hard, I’ve had to put a pillow on top of the sofa back to help. In fact I’ll probably be sleeping here tonight as my stairs seem to have magically multiplied.

Nina I hope you’re feeling a bit better, and everyone else is okay. Take care.

Cath xx

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Thanks for the hugs Pam!

Hope all is well over there in beautiful Gloucestershire?

Nina xx

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Thanks Mags.

Always intend to have the phone near me but to be honest it’s so rarely for me that I just forget!

My friends and family always message me first, bless them! There are a few people without MS that can accept, even if they don’t understand, that being too exhausted to string a sentence together is quite normal for us.

Nina xx

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I owe all of you an apology.

I am very sorry that I wrote such an insensitive post. It’s not characteristic of me. I only realised yesterday that I’ve very brutal recently.

As I result, Gill and I went to our GP and told her that I’m getting too stressed for my own good. Dr. is going to refer me for some treatment. On the way out I passed a library. I went straight in and took out books on stress, meditation, anger & management.

I know that I’ve been pushing myself too hard and I expected everyone else to do the same. I deserved that kick up the bum.

So, and I can’t repeat this too often, please forgive me, for I know that I have harmed you, especially Robin. I’m so sorry.

I am very sorry.

Anthony

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Oh Anthony! No apology needed for me. We all get stressed out now and again and I think you have done me a favour I have discovered I still have some fiestiness left despite this blooming awful illness.

take care,

Mags xx

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Anthony we all deal with things differently. Sometimes when things are written down they can be interpreted in many different ways. We try to understand that, don’t beat yourself up, it was your opinion on the day. Hope you manage to sort out whatever you’re struggling with.

Don’t worry, we’re not going to banish you. Take care.

Cath x

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