Living with MS .......... its harder than you think

Its been a week of ups and downs for me, 

but the hardest part is never knowing 

if the next day will be a good bad or indifferent day ! 

My heart goes out to many of my friends and fellow MS sufferers and their families. 

I know I have it easy compared to some and worse than others 

but the we all have one thing more than the MS in common ................................

This is not a whinge or a rant its information for those that really do not understand the full impact MS has on peoples everyday life.

Imagine just how you would view your life if one day you woke up and everything you once knew was gone and in its place were new things and new rules to live by the people you love were there but they treat you differently your partner became more of a care giver than a lover or best friend, your children spent more time helping you than you helping them and none of that was what you wanted and no matter how hard you try there is nothing you can do to stop it happening and all the time you are so tired. So tired that you struggle to do anything! that includes staying awake, you find a simple shopping trip down the road for an hour or so drains you so much that for the next day or 2 you need to spend recover. 

You body betrays you in so many ways 

movement 

pain 

tremors

tiredness

bladder problems 

bowel problems 

as many other problems

and a brain that really just doesn't seem to work the way it used to memory etc is affected

Now I hear you say thats not so bad you adapt and move on lifes not always fair ...........

the problem is that if it was that simple you could move on adapt and accept but MS does not play fair!!

MS moves the goal posts for some it is more frequent than other it all depends on the type of MS you have and the amount of relapses you have also on whether they have managed to control your MS adequately with medication and other therapies.

It almost feels like you know no matter how much you adapt and try to move on you know that one day 

you will have to accept another bunch of changes some may be small some may be a lot harder. 

No matter what has changed it brings with it a feeling of loss another part of you/ your independence/ your ability has gone or been affected. 

This cycle is unpredictable and it does not really give any true warning 

relapses can be sudden or can 'build up' over time.

Those with MS and their families and closest friends often suffer with depression, 

and so many people question why they are depressed ..........

I ask anyone who question it to be constant pain with a body that changes as and when it pleases (in ways that are not very nice at all) and every relationship they ever had put under strain as well as make every part of their life 10 times harder to do not to be depressed or upset!

Yet there is a distinct lack of help out there for families who have or live with someone with MS let alone parents, children or siblings of those that have MS that do not live in the same home as the person with MS !

I do not hide the fact that I have PTSD, depression, MS as well as countless other health problems 

and its not like I can hide the fact I am in a wheelchair..

For the last 3 years I have dealt with multiple relapses some minor some major I have friends with MS who I take time to talk to and support as I know how difficult it is and I have seen them go through many changes in that time as well and no one can understand that we don't want to keep putting on our partners, parents, children and friends as 

1) they don't fully understand how we are feeling

2) they live with us do they really need us moaning as well ?? 

3) do we really want them to see how its making us feel causing them more worry and stress....

hmm NO ..

Partners feel more like carers as it is !!!!

I want to be 

Wanted 

Lusted after

Cherished 

an Equal in every way 

instead I get 

helped in and out of the wheelchair 

washed

etc etc 

MS !!!! 

Its changed everything 

not just for me but for every MS sufferer out there

as it stands there is no cure 

it is managed by combinations of medications and treatments 

that don't always work..

I ask to you get in a wheelchair and see how much of your life is wheelchair friendly start at home 

are your doorways wide enough ?

can you negotiate your way round your furniture ?

is your toilet downstairs? 

are there steps into your home? 

If someone is on stick/ crutches or even unsteady on their feet 

is your home safe for them ? 

they need just as much space etc as a wheelchair user...

Am I saying you should modify your home 

No most definitely not 

but spare a thought to your friends that do have disabilities no matter what they are 

when you get grumpy or agitated when they do not visit you

maybe they are like myself and too polite to say that your home is unsuitable for a visit due to their disability 

or they struggle to get to you due to tiredness or the stress caused by the travel.

Then there is the bigger problem outside 

try getting around people as you are self propelling a wheelchair or pushing a wheelchair

then do the same thing going up a hill and then down a hill 

go around shops try and get the item you want off a higher shelf 

whilst you try and keep the shopping basket steady 

put something large and uncomfortable in your shoe and try to walk anywhere 

people with walking difficulties find it much harder but it will give you an idea 

I'm not moaning at anyone I just want people to understand what its like 

awareness is just that being aware

 its not just what you see on the outside 

love Kayla x x