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Mummy’s will understand

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Things only a MS mummy (or Daddy) would understand (or all mummy’s and daddy’s!):

– You’d rather smell poo, than have the energy to chase a toddler who won’t have their nappy changed!

– Being a MS mummy, means you know the nearest and best loo and break stops, and did I mention parking?

– Many MS sites talk of feeling like a warrior, you’re a warrior when showered, dried your hair and even put on any make up

– You think whether it’s worth negotiating the car seat, parking and going out, as it can mean more effort, so online it is

– Hospital and doctors appointments are meant to help. But it’s tiring

– You’ve lost the car again. It’s a game for mummy and little man. The only time I know where I’ve parked is after the summer holidays when the roof box is still on!

– With your garden being attached to your home, it becomes your best outdoor friend

– My carpet is not clean, I’m a MS mummy

– Sod the advice, you need caffeine, drink the coffee!

Inspired by #healthline #mummy #mom #daddy #MS #multiplesclerosis #chronicillness #toddler #tips #parenting

School’s out, summer fun

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I’m very proud my tips for enjoying summer are published in the recent MS Society magazine (paper and on line).

800 patients have MS in my home city, which is far less than the readership of my local paper (99k) and a recent gig at my nearest race course gig (35k). Perspective!

I’ll post here, or follow me on ” poorlyparents” on Facebook or “mummywithms” on Twitter, or donate a fiver to become a member of the MS Society and receive the magazines.

The full article is below or on the MS Society blog page. Thank you.

P30 Summer tips

https://www.mssociety.org.uk/ms-support/community-blog/2017/07/school’s-out-tips-summer-fun-ms-mummy

No Emeli Sande

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I read a post today which said “MS isn’t for the faint hearted….. it’s tough, life changing and Msers have little choice with their fate” (thank you Kate).

Today, my choice was to stop disease modifying treatment. I know the risks of not taking disease modifying drugs but I need a better quality of life, enough is enough, I can’t carry on, for me, especially for little man. My nurse has said “I’ve got the option to stop treatment” but the ball, like any medication, is firmly in my court.

With most things, we are conditioned what to do. Not with MS I feel.

Like Emeli Sande, I do want to ” scream, shout, put it in all of the papers” mainly because I feel so alone, I so wanted results and just want everything to go back to pre MS. But I have a chronic condition. No amount of pity partying is going to change that. Feeling and looking drunk maybe an option but I’m going to see if without the drugs, things improve. Debating whether to stay or go, is a recurring thought process. I really think the drug is making me worse than before. “Give it a go” “what have you got to loose” my nurse said to me nearly a year ago. I think I’ve given it a go. Little man is snooze cruising, think Mummy will too.

#emielsande #ms #multiplesclerosis #treatment #dmds #drugs #muMSuk

I’m not pissed

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I haven’t written for a while as I’ve been trying to deal with disability. When I first got told about MS by my consultant, he said ” many people who have multiple sclerosis lead a normal life”. What’s normal about looking like you’re drunk when you’re not?

My speech has been slurry since Easter. Balance has been not great. My walking has been hit and miss. I’ve fallen off my bike. I’m now thinking of getting a trike. Apparently they are not just for little man! I’ve had a stair and grab rail fitted. Looks great. I’ve had a few comments, people think I’m drunk. What they don’t tell you in a consultant office is how you’re going to feel when things aren’t great. I wish I was drunk.

I’ve been out with my stick a few times. As well as helping me, it gives people a visionary clue that things aren’t alright. Little man loves mummy’s new game of using it as a golf club with his football! When I don’t have a visionary clue, everyone just thinks I’m pissed. I’m not.

When you see somebody stumbling, don’t assume they’ve hit the vino. They may have but it is probably down to a host of reasons why they are stumbling. I might have a glass of wine.

#ms #multiplesclerosis #stumbling #stick #switchsticks #speech #balance #trike #drunk #wine #vino #barbaraastrensland #stumblinginflats

Kiss goodbye

IMG_0275.JPGLiving in a social media world, where you fart then comment, everyone knows about it, has an opinion, you may feel scared to say how it is for the fear it’s just a fart! But social media helps as you can simply search it. I’ve found loads out via the internet especially managing MS and little ones. But it can also be scary especially as we live in a fake news world.

Dealing with any BIG thing seems more daunting when a little one is involved. It seems even harder when you’re having a WTF day.  In November, I wrote “Annie Lennox week”, you often ask yourself “Why”. We probably have WTF days or Annie Lennox’s weeks, but since being a MS mummy, they seem to be coming and coming. I want to “kiss them goodbye”. Sitting on your sofa, having a pity party. I want to “kiss goodbye” this feeling.

There were two key questions when I was diagnosed, how you will react, especially when things start to develop and how others will react. Years on since my first symptom, you’d think I’d know how to deal with it. Whatever happens in your life, a label is applied. You buy a new car. Suddenly you’re part of a new club. I’m little man’s mummy who also is dealing with MS. Its what I write about it, so I can’t be a hypocrite. But many times I don’t wish to deal with this label and want to kiss it goodbye. You’re a mummy living with a chronic illness but i’m also a daughter, sister, wife and friend. Relationships change. You don’t want MS to define you, but it’s a label you have to deal with.

So how do you deal with this label? You hear slogans like MS warrior. I don’t feel like a warrior after dropping coffee on the the kitchen floor and having no energy to vacuum. I’ve had my pity party.  So what are my tips to get a grip of any MonSter:

1. It’s personal  I haven’t been able to write well for over a year. I don’t like asking my husband to write for me. I recently got a stair rail fitted and my speech isn’t great. Like parenting, MS is a moving feast. You have to deal with every personal challenge. I know it’s not the end of the world.

2. Don’t be strong, just be yourself  I stole this from my MS friend. Whatever works for you, just do it. You read about being a warrior. Fighting. Throw it all out of the window if you want to. Be yourself whenever you got your diagnosis. Be kind to yourself. Apply your lippy if it makes you feel great.

3. The drugs don’t work My last blog was about drugs. Like the previous point, do what works for you. Drugs. Attitudes. Whatever. Read, get opinions, but go with your gut.

4. Adapt I got a stair rail fitted and it really helps. I don’t know why I struggled for so long. You may not wish to admit but adapt.

5. Shout! Shout for help and support. I didn’t for ages. Probably due to pride and stupidity. You realise who really counts.

I can’t #kissgoodbyetoMS, but with my best lippy on, it may not seem so daunting.

#MS #chronicillness #diagnosis #cope #mummy #parenting #stumblinginflats #mssociety #kissgoodbyetoMS