Last reply 3 years ago
Something my MS can't interfere with

All I want to do at the moment is to scream, not at anyone or anything but just for a…release. I wanted to post this on the ms society forums as I don’t want to change peoples opinions on here of me but registering on their website isn’t as straigforward as it should be, I could find out how to do it but I can’t be bothered.

My MS is really taking the proverbial at the moment, there aren’t any new symptoms, nothing obvious anyway, everything is REALLY difficult. Trying to navigate through the maze that is social services is frustrating, my extra difficulties are simply confounding that fact.

Here’s the real kicker, when I get frustrated at life, my situation, the fact I had to call an ambulance out tree times in three consecutive days to pick me off the floor and the fact I have this annoying habit of peeing myself in bed, my head wants to stop everything. Literally stop everything, you know, kill myself but I won’t. I’m too bloody rational for doing the proverbial deed as it were, no my head is quite content to pump my brain full of chemicals to make me feel rubbish and within a half hour I’m back to feeling normal again. I get fed up of the guilt trips my brain lays on me for doing or not doing various things.

All I really want is to fall in love with a special lady and start a family with her, something that my MS won’t be able to interfere with.

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3 years ago

I hear you @gav. I think we’d all like to have that scream every now and again, when life’s frustrations get too much. I know that when I’m alone, I “vent my spleen” and turn the air a bright shade of blue.

It gets something off our chest, but does it change anything? Does it improve everything?

Then we have to get philosophical and work out what we need to do to move forward again.

I can imagine that dealing with Social Services is a major frustration. They are a cash-strapped service and money is going to stay tight for them. But, you have a need, so you need to work with them. Teamwork wins everytime.

Falling over is an occupational hazard for us. So, we need to acknowledge that. We need to work within our capabilities, to mitigate the risks.

Peeing the bed! Been there, done that. But, I got myself referred to Urology. There are all manners of answers available. But we have to go and find them, they don’t come and find us. Have a word with your MS Nurse and see if they have a continence advisor to start that ball rolling?

We all have days where everything gets too much. These days seem to be more frequent in mid-winter and just after Xmas. But we take all the shit that life throws at us and we pick ourselves up and move on.

Life is full of opportunity, but we do have to make an effort to find those opportunities. Yes, it can be difficult, but we have to find a way of making the necessary effort.

Gav, it’ll soon be Spring and the world will look a better place. However, we do need the bad bits in life, just so we can fully appreciate the good bits. 😉

3 years ago

@gav Ditto what @stumbler said… you have been on quite a roller coaster ride of late so don’t be too harsh on your self.. stay strong.. get some problems sorted and then get out there and find the woman of your dreams and get procreating 😉 Best wishes

3 years ago

Friends may be virtual, but they are friends none the less. You are not alone, keep talking to everyone and you will make the strangest and least expected connections. Romantic love is not the only kind of love , the movies con us often, just because they want to sell us an unrealistic view of existence, but if you keep your mind open you can find real nourishing love in all kinds of places.
I hope I don’t sound trite, I can see you are in low place, but I really do believe romance is a fleeting hormonal kick, and that real love is not sexual, it crosses ages, genders, races and some times even species!!
Big, real cyber hugs.

3 years ago

Hey @gav. I’ve missed your YouTube posts.
Perhaps we should organise a flash mob scream! No ice need be involved.

Have you spoke to your MS Nurse about how your feeling? It does sound like it may help to talk to someone and quite understandably given what your going through:( .
Your Local social services should have an independent advocacy service – may be worth contacting them to help you through the system.

3 years ago

@gav I hope you’re feeling a bit better today. It was so sad reading your post. Don’t give up on yourself,everything in life happens at the right time (although until it happens it just sounds like bullshit).
Is there someone that can help you navigate the social services maze? If so this sounds like it would take a lot of stress off you.
When you’re feeling down and lonely just remember we are all here just a click away.
Take care.

3 years ago

@sandwich the flash mob…hahaha love it. Does @gav have YouTube posts? Or anyone else for that matter? I have followed an Australian lady with MS in YouTube.

3 years ago

Hi Gav,

I don’t have much more to add to what else has been said but to say that I feel for you and how frustrating that sounds. It sounds like you know that there will be brighter days but for now its ok to feel pretty p*ssed off – the situation you’ve described sounds really tough at the moment. When I feel that way I try and let myself feel annoyed but also to find some small steps to help keep moving forward.

Chin up, we’re with you

3 years ago

@gav totally feel the same as you and its hard to control lifes challenges.theres
always a spanner in the worx. maybe we just really hard on ourselves. I dont know.

Iv heard it all before – i guess all i can say to you is find a happy place be comfortable- sometimes we need to screw the rules and just be in this moment.
embrace lifes little comforts you have at your disposal.
we all just human after all.
we allowed off days and days of comfort and indulgence.

my grandmother use to tell me if you too heavenly good you then no earthly use lol

3 years ago

@aussiekylie ou asked if amyone does youtube, i’ve done videos since I was diagnosed back in 20007. I have my own personal take on ms

3 years ago

Hi Gav, hope you feeling a bit better.
I have just been watching your you tube clips and I think they are brilliant! They are funny and wise and deserve a much bigger audience. I wish I had found the one about being just diagnosed when it had just happened to me. They should be a resource here on the site. The funny thing is you look a lot more approachable on the clips than your current photo, but that’s just me! Good luck – good things do happen!

3 years ago

Love the new photo!

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