Amelia and her monthly Tysabri

Amelia Grace Roe

MS &

Gepubliceerd: 15 maart 2017

Vorig jaar hebben we haar blog gedeeld op Platform MS. We hebben haar ook gevraagd of zij een persoonlijk verhaal wilt delen op Platform MS. En dat wilde ze. Het heeft enkel wel bijna een jaar geduurd. Oh well, she has MS. Let's read the story of Amelia! The girl from the UK.

Amelia and her monthly Tysabri

This post has been a long time coming, After an MS community site (Platform MS) got in touch with me and asked me to write something I've been putting it off and off. Where does time go! But this is me. Writing that post. I promised such a long time ago.

Monthly Tysabri & Over coming a massive Needle Phobia!

"Hi I'm Amelia for those who don't know me (Basically all of you reading this)..."

I was diagnosed with Multiple Sclerosis (MS) When I was 17, Last year, and since then it's been a whirlwind of hospital appointments, Monthly Tysabri & Over coming a massive Needle Phobia!

A big factor that is hard to cope with I think is being so young, Any young person with a life changing illness or health problems can understand, that sometimes people don't realise what happens behind closed doors or what you have to cope with on a daily basis.

I find it particularly hard to explain to people the Symptoms and effects from my MS, And when people don't understand, trying to explain.

But you know if you push to hard your body will suffer afterwards, and it'll take you twice as long to recover.

A big factor with having MS is living with the Fatigue that gets in the, way so to speak, with plans and appointments you have to keep. Muscle Pain too can be agony in some cases and I know of other people who have to use a wheelchair.

I think it becomes Harder Living with MS when you're Young, but also when... from the outside no one can see you live with an illness or disease, and you look fit and 'normal'. Other young ones will probably agree with me when I say it's aggravating when you can't join in on plans or you really want to maybe go to a party or away with friends, But you know if you push to hard your body will suffer afterwards, and it'll take you twice as long to recover.

It's Rare to find a young person with MS as you would normally find it effects at the age of 20-50. However at any age it is difficult and frustrating to suffer with MS! Young people can see around them what other people their age are doing and knowing they can't do the same, or are limited to what they can or can't do.

One thing I personally struggle with and become annoyed with, is that I couldn't hold down a 9-5 Job, I never know if I'm going to have a good or bad day, Or if I am having a bad spell or a few bad few weeks how long it'll take to get that little bit of energy back to do day to day things again. When other youths around you have a fixed steady job with a fixed wage and it comes onto the conversation of "What do you do?" It's moments like these you have to explain your situation, and just sometimes it can become tiresome.

You don't want it to be a big label on your forehead!

If ever someone does feel like they are having a bad day though, Or needing help in trying to understand MS more, there's lots of different sites that have a big MS community with different peoples stories- the thing to remember is Everyone is different and struggles with different aspects of the illness.

Mainly... a big issue probably everyone feels! Is you don't want MS to become the main thing people recognise you with! You don't want it to be a big label on your forehead, You still want to have a career & learn to drive (In my case anyway) But its important to remember if you are having a bad patch or need to use a wheel chair or opt out from a party or event then that's okay too, Your health comes first.

The MS community is so large and helpful I'm pretty sure there'll be someone out there similar to you in the same situation,

Before I go I just want to say, there's always someone suffering more, Someone struggling more... So be thankful for what you can do. Sorry, it took me so long to write this for you Platform MS. Thanks Floris for reminding me!

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  • Eric Sloep schreef:

    Wat ben ik blij dat ik al 48 was toen ik de diagnose MS kreeg en ik al heel wat jaren carrière had kunnen maken. Dit verhaal van deze jonge vrouw doet me realiseren dat ik geluk heb en zij helaas niet. Ik gun haar ook kans om een leven te leiden als iemand zonder MS. Ik ben echter machteloos, net als ieder ander.

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