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Started with eyeliner

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Very honoured that my second guest blog for http://www.ms-uk.org, MS-UK has gone live. Link below.

https://multiplesclerosisuk.wordpress.com/2017/09/29/guest-blog-how-it-all-started/

Hi, I’m Joanne and was diagnosed with RRMS in October 2013.

It all started with eyeliner. I was trying to put some on before going to work. I thought “crikey I can’t see very well, maybe I have overdone it.” So off I trotted to the opticians, who then referred me to the hospital. My journey began. I was told I’ve got fuch’s disease, more prominent in people who have different colour eyes like me (I still need to be monitored for this, no, I’m not related to the late David Bowie!). I started with daily fatigue and weakness in my arms. Googling symptoms, I convinced myself of all sorts including a brain tumour. My eyesight was getting worse. My kindle was my best friend as I could zoom in and read (like all three books of 50 Shades!). I was off work and eventually the hospital told me I had optic neuritis. The first mention of MS started. Lots of procedures including an MRI (wear socks so you feet don’t get cold is one of my tips) and my spinal fluid was taken twice. A never ending journey of hospital appointments. I didn’t want to believe it because I hadn’t been diagnosed, which came a year and a half later so I spent a lot of time in limbo land. It was frustrating. I didn’t really have a clue about MS. I’m still learning.

As you know, there are many symptoms of MS. Mine have included daily chronic fatigue, pain, weakness ( I haven’t properly written in over two years), numbness, poor balance ( falling off my bike was fun, not!) rubbish walking ( I now have a stick) slurred speech (no, I’m not drunk, but probably sound it!), swallowing problems, bladder issues (what joy!), smelling of smoke (apparently this is an unusual symptom) and various other things. I was on coproxone injections before I fell pregnant. I had a really bad reaction and ended up in hospital. I’m was also on Tecfidera tablets for ten months but came off recently, am waiting for a neurology appointment and debating my options.

My main thing has been trying to deal with being a mummy with MS. I found there isn’t anything that addresses how you look after yourself and a little one at the same time, so I started to write. I’ve been writing for the MS Society, other MS charities like MS Trust and Shift MS and my blog, poorlyparents.wordpress.com.

You can find me at, if interested.
Poorlyparents.wordpress.com
Poorlyparents on Facebook
Mummywithmsjmhc on twitter

Today I start writing for the MS UK. I’m no expert on mummy or MS stuff. The biggest thing I found helpful is gaining an understanding from others who are in the same boat. I’ve not met anybody like me. Maybe social media will help. Thank you for listening. Here’s to more blogs.

#chronicillness #diagnosis #disability #MS #multiplesclerosis #parentwithms

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Are you ok?

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Like my friend and mentor, Barbara Strensland, the five stages of grief annoy me too. It seems too picture perfect. I’ve probably gone through them all but not in a neat orderly fashion. Despite my diagnosis anniversary approaching (I’m going to have a glass or two, I like wine!), you remember those life changing words said to you, you don’t believe it, assigned a neurologist and nurse and the MS journey begins (don’t sound too Simon Cowell!). To be honest, I was just plodding on for the last few years but since last Christmas, physical things have been going south. You think how will it affect you, your husband, little man, family and friends but you just get on with it. What choice have you got?

I think I’ve accepted I have MS (the last stage in the grief cycle) but every day reminds me to accept how how having this condition will impact, especially over the past few days. I didn’t anticipate how my condition would affect other people, and how I would be over their reactions.

I’ve been to various kiddie things this week, as mummy of little man. A children’s adventure farm was the first and secondly, a children’s gym. I wasn’t on my own for either of them. For a start, I can’t physically do what little man requires so need the help of family. Don’t get me wrong, I am grateful but sad that it isn’t me able to climb up on hay bales or bounce on a trampoline. I was asked today “am I ok?” by the gym manager, as the children’s gym is insured for injury happening to children, but not for me. I get why I was asked that but felt despite not taking part (Grandma is bringing her fitness tracker next time!), I felt useless. Useless isn’t in the five stages of grief, maybe I should put a new stage in, or it maybe it’s acceptance that this is happening to me?

Denial
Anger
Bargaining
Depression
Acceptance
(Elisabeth Kubler-Ross)

Maybe that’s why it’s the last stage.

 

#ms #multiplesclerosis #children #kiddie #parenting #acceptance #blog #grief #barbarastrensland

A world filled with colour

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Many of us learn skills at school we don’t use. Like my friend Lucie, who I met through my local MS Society group, art is something I’ve used to channel my creative energy but to be honest, being a busy Mum to little man and dealing with my MS, I’ve not thought about how things I used to enjoy may help today. Hats off to Lucie, she has a business (facepainting.com and you can read about Lucie’s story on the MS Society community blog page).

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I’ve just finished a course in art therapy, recommended to help with my condition (thank you St Leonard’s).

To be honest, I didn’t know how picking up a paintbrush would help me. I can hardly write, so I won’t be a Van Gough I thought.

For those wondering what art therapy is, I looked it up and google describes it as “a form of psychotherapy that uses art media as its primary mode of expression and communication”.

How’s it helped me? Through the use of art, I’ve explored emotions due to my illness and physiological make up. Like writing, i’ve also enjoyed it. I’ve picked up a paintbrush again, i’ve not done that since my art GCSE days, many moons ago! Like exercising (did you see it in the news again recently?), as long as you do something to engage your brain, it’s mental exercise.

It can be anything to challenge yourself. It doesn’t have to be art. What have you got to loose? I’m off to buy a paintbrush and paint.

#art #paint #arttherapy #physiology #mummy #metime #ms #multiplesclerosis #mssocietyyork #mind #exercise #creative #stleonards

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