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Mighty Shitty

E83943C5-8509-4573-93BA-77E2CC3A8CEA#MS should stand for mighty shitty in my opinion. I’ve been toying with my options and #treatment doesn’t have to be rubbish, but for me, it has taught many life lessons.

My experiences are written into an article for the latest  #MSMatters, the #MSSociety magazine, which are my tips when choosing any treatment. Ironically I’ve been wanting to post since it was published but life has got in the way.

 

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#treatment #mssociety #ms #multiplesclerosis #drugs #dmd #diseasemodifyingdrugs

 

 

 

 

 

 

 

 

 

 

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To quote Cher ” if I could turn back time”

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You have to change clocks twice a year for Spring and Autumn. Tonight’s the night for “falling back” as British Summer time ends, GMT resumes. Clocks go back an hour from 2am Sunday morning.

My 5 tips to manage time change from a mummy with MS:

1. Do you change routine?
You can either move your routine a little to compensate for the time change or go with the new time. We try and move routine in line with the change of time but we will be doing lots to wear little man out. But to be honest, it probably takes a few days to embed with little man and me! And sadly for all parents of little ones, we don’t get an extra hour in bed. Enjoy, if you do!

2. To help
We have blackout lining in little man’s room which has been a godsend to help him sleep. With the time change and days darker, little man’s routines are out of the window for the first few days. We often say “this used to be x time yesterday”. A groclock might be a useful investment to educate little ones about day and night time. Limit any screen time before sleep, whether this means TV or tablets. Good for everyone, not just little man. The blue light omitted from these screens tricks the brain to thinking its day, so it is not great for trying to get to sleep. Some studies say that light therapy helps MS as it may increase vitamin D. Try to get as much natural sunlight as possible. The forecast looks good for that.

3. Rest
With darker days, it’s a perfect excuse to get out in the daylight then put your feet up when it’s darker. Be a little # hygge (google for more info!). Put rest time in today and tomorrow. The time change might not feel as bad.

4. Clocks
I change any clocks before I go to bed. It limits the brain fog and avoids any mistakes (as I’ve changed them twice!). Know which clocks change automatically and which ones you have to manually change.

5. Good luck!
Apparently today is #moonday, with darker days, a perfect excuse to look out at the moon. I will looking from inside though!

#clockschange #rest #sleep #ms #multiplesclerosis #parenting #gmt #moon #hygge

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

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