The Beginning...

So, I decided to blog about my MS... why? because the simple act of writing 'it' down is very cathartic for me.  If you have ever experienced this condition, you will know, you have to do whatever helps in order to get through each day... so I'm hoping this will help me...

I'm, Karen...

 

(April 2016)

Yep, that's me... just an ordinary person, no-one special.  I'm not particularly good looking; I'm not super-intelligent; I haven't invented anything or made a name for myself... I'm just me, ordinary, average, everyday... me.  Except, I was (finally... but, that's another story) diagnosed with progressive MULTIPLE SCLEROSIS (not to be confused with 'relapsing remitting' MS - I never get a break from this debilitating disease!)

 I supposed I should give you some background, but I think that'll come as I write more... so if you want to know me... you'll just have to keep reading as I unload to the world!

I will say... I was diagnosed (after a hard fought time with the NHS) in Sept 2014, after various tests, waiting for results and bouts of worrying (what is wrong with me?) and hoping (they maybe able to fix me, but not before they know what's wrong!).  The bad news was of course, that my MS was of the 'progressive' sort and therefore, "here is nothing we can do for you". Well, thanks for nothing!

ME: I'm divorced with two grown-up children.  I live in a flat (not ideal, but hey ho, beggars can't be choosers).  My family owner and run a static caravan park in Wales, we've been here for the past 30 years.  I live in one flat (above the clubhouse), my mum and dad live next door, my son (he works on the caravan park as a general dog's body manager) lives in the flat above mine and my daughter is an early years teacher, she works and lives in England.

MY MS: I have lots of moaning to do... but I won't overwhelm you with it all at once (I'll save some for future posts!).  Needless to say my 'progressive' state has progressed...
 
I have a few health issues (thanks MS - you'll probably read a lot of sarcasm in this blog, it may be the lowest form of wit, but I'm still glad to have any kind of wit at this stage!), I will name but a few...

• FATIGUE   -   its NOT tiredness (or being lazy), see 'spoon theory' it will explain it better or listen to this on how 'The Spoon Theory' was born.

·         BLADDER/BOWEL PROBLEMS   -   ooohh, these difficulties can make the difference about whether you want to live or die!

·         PAIN   -   neuropathic pain is so REAL, and something few MS sufferers do not experience in some form or other.

·         SPASMS   -   no explanation can do them justice, they are the worst!

·         SPASTICITY - (rigidity/stiffness) mine is mostly my left leg, so difficult doing anything when your leg is stuck in one position and will NOT move.

·         SENSORY DISTURBANCES-ABNORMAL   -   have YOU ever feel that cold water is dripping down the side of your head or ants are crawling all over you or constant pins and needles throughout your body?

·         SENSORY DISTURBANCES-PAINFUL   -   the 'hug' (not as nice as it sounds!) or freezing cold that cannot be warmed?

·         MUSCLE WEAKESS   -   until your body can no longer support itself.

·         COGNITIVE CHANGES   -   memory relapses (who am I?), confusion (what am I doing?).

·         DEPRESSION   -   I am dying a slow, painful death... but I'll keep smiling! (and there's that sarcasm).

·         There are lots more, but I'm getting depressed listing them, so I'll move along...

One thing that I've found that helps me cope in times of stress (stress... a very bad thing for MS'ers, it will exacerbate everything in a bad way and make it all SO much worse... avoid, avoid, avoid!) - is online support groups, particularly, for me, a Facebook group - The UK MS Support Group.  The like-minded people there have rescued me from deep depression on a number of occasions!  This was my last cry for help post...

24th August 18:25

Feeling sorry for myself 'cause progressive MS sucks!!!

People with progressive MS have a different illness -- physically and emotionally -- than other MS sufferers.

There’s no new treatments!!! Advanced research, medication and new testing is not for the likes of you! Progressive MS sufferers feel left out by health care professionals and researcher -- we are told... ‘we can’t do anything for you.’”...

The experience of progressive MS itself is different, too. Unlike people with other forms of MS, who have attacks followed by symptom-free periods, people with progressive MS are living with a disease that steadily progresses and worsens...

There’s no “bright side” to progressive MS.

Signs: While there is no definitive timeline and not everyone will experience each symptoms/problems, the following are some of the things which may happen with progressive MS (look what I have to look forward to...)

 1. Breathing: shallow and ragged sounding, laboured, many bouts of pneumonia (tick to the breathlessness, oh goodie pneumonia!)

2. Swallowing problems that cause choking on food, fluids, saliva (tick)

3. Worsening bladder and bowel problems, having a permanent catheter. (tick...TMI pooped myself today... bring on the nappies)

4. Pain starts or becomes much worse, and the person needs strong pain meds, such as morphine or fentanyl patches. There can be very dangerous drug interactions with the MS drugs, anti-depressants, sleeping pills that can slow the heart and breathing to life threatening levels. Drug addiction can result as well. (tick to the first part... drug addiction doesn't sound so bad about now)

5. The drugs and/or the MS make person more disoriented, lack of focus, crying out in the night, not sleeping through the night, needing more and more assistance from carers because they are uncomfortable, need a drink, repositioning, more pain medication.(what sleep, what carers)

6. Changes in mental attitude, worsening depression, forgetful, worried, anxious, confused... (tick)

7. Having a feeding tube. (I'll save on washing up)

8. Needing a respirator. (It'll be easier to give up by this point!)

9. Needing 24 hour care.

10. Many more trips to the emergency room and hospital stays for any of the above problems, and/or infections, low electrolytes, low blood oxygen, low pulse, and more.

Oh, yes... feeling VERY sorry for myself and all the poor people around me, who have to watch my slow decline into human jelly! No more reading up about MS for me!!!

Within just a few minutes I had people (strangers but fellow sufferers) offering support and advice, helping me through my MS blip and making me realise... I am not alone, there are people who do understand what I'm going through, who sympathise and offer whatever support they can!

 

 

 

Together We Are Stronger...