Tuesday, July 05, 2016

A partner's / carer's view of M.S. / Multiple Sclerosis

Carefree Canadian Days
I've been thinking about writing this for a long, long time, just haven't found the words, still not sure I have tbh.
The following is my and only my view of what its like to be the partner / carer of someone with M.S.
I say partner / carer as the lines rapidly become blurred, and at times it can feel as though your more carer than husband /partner / wife / girlfriend / boyfriend / fiance / fiancee etc.
Lets go back 10 years, we had just gotten back to the U.K. after almost a year in Canada (we came back for a myriad of reasons - too many to go into - had we not..the road taken, likely would have been a lot lot different)
A few months in, I noticed Jen stumbling, tripping over her feet, falling over for no reason, then she started having pins and needles and loss of sensation in her hands and feet.
Thankfully the GP recognised it as stocking and glove neuropathy, and referred Jen to neurology, at this point I was working as a Bookseller in Borders Dundee, getting by and just so.
A few months later after a lot of blood tests and an MRI came the bombshell. We were called into the hospital for a follow up appointment with the consultant, she was asked to come to the ward, when the consultant came round, he asked if he had seen her since her MRI, she replied that he hadn't. He then asked the nurse to arrange a sideroom. Should have known then that a train was about to run us down..
I'll give him his due, he didn't mince his words or dance around the bush. I'm sorry you have MS...those words are burned into my brain, I can see the whole thing still in my head.
Kinda reminds of a line Baz Luhrmann used in a speech, which IIRC was based on an article someone had written for a newspaper column. "The real problems in your life are the ones that never crossed your worried mine, that blindside you at 4pm on some idle Tuesday" in this case never a truer word was spoken.

The sensation I can only describe as being akin to being flattened by a train or standing with your foor caught in train tracks and seeing the express train barelling down on you with no way to avoid it.
(On a sidenote, the water stopped working just as I came out of the bathroom, the only time I've ever used the toilets on a ward, when not a patient and NOT been nagged by a nurse...one plus of being given life altering news I suppose...)
Fast forward 10 years and what advice do I have

1) Be adaptable - if anything MS is unpredictable and can and will bite you in the ass when you least expect it
2) Don't be surprised if no one remembers to ask how you are or how your coping (if you are)
3) Carpe Diem - Seize the day, as corny as it sounds, while you and your partner can still walk places, travel etc without planning ahead and making various comprises to take account of their needs DO IT. Trust me, if I could wind back the clock ten years, there are so many places I would go and so many things I'd go and see with Jen, that she physically can't walk to anymore
4) Learn to be a pain in the rear, as my father in law told me - "The squeakiest wheel gets the grease", if people don't listen, make a noise like failed bearing - be loud, be annoying and stand your ground - If in doubt escalate matters upwards.
5) Motivate, your partner is going to need that help, when the going gets tough, when they feel like they can't go on another step, the more they do, the more they have in reserve when the MS demon comes knocking, in the case of RRMS - between relapses help them to try and regain lost ground
6) Get used to dirty looks from those who don't understand or want to understand, if your partner has a disabled parking pass - USE IT, if they qualify - APPLY. You may not always need it, but any help is a godsend on the worst days
7) Be prepared for your partner to be moody, distant, depressed (and be prepared to go through the same yourself) Getting this diagnosis, is something I wouldn't wish on anyone, its akin to walking blindfolded through a minefield - You always feel like your waiting to stand on the next mine and be blown apart once more.
8) Understand that others won't understand, even though they will claim to, known that even your closest relatives won't get how you feel or what your going through or won't see the little losses that you see, notice and feel. "oh but she's not that bad" "I knew a woman, whose husband did everything, when he died she managed to do so much more, let her do stuff for herself" and other folk tales that bear no resemblance to what your going through, not knowing whats going to happen day to day or week to week and not be able to plan ahead properly.
9) learn where public bathrooms are, MS often irritates bladders and bowels and often without much warning
10) Get used to the inside of a hospital, if my experience is anything to go by, you rapidly get used to the inside of a hospital and spending a lot of time sitting around waiting for tests, visiting, more tests to rule out x number of diseases and then be told its the MS again or worse have to argue with Drs to get them to do tests and not just write stuff off as "just the MS"
11) In the UK the DWP (Dept of work and pensions) are horrid to deal with, they frequently take the most stupid POV on matters, Jen had to apply twice to get her DLA award to begin with, then had her renewal denied after a worsening of symptoms, until the decision maker wrote to her specialist nurse and only after I kicked up a royal stink and threatened letters of complaint and letters to any relevant MPs, though it was a bit of a shock when they reinstated her award at a higher level, obviously Jen's symptoms are worse than either her or I see.
12) be prepared for your partners medical notes to rapidly go from gossip mag thickness to something resembling the NYC, LA and London,UK Phonebooks
13) The sight of blood will rapidly lose its shock value, visits to phlebotomy become par for the course
14) Drs will often know less about MS than you or your partner will know, the more you go through the more technical terms you learn, every symptom that develops, you learn its name, cause etc - Lhermittes sign, Trigeminal Neuralgia, MS Girdling/Banding  etc
15) Treasure every moment, I feel like at times I wonder where 10 years has gone, its like my life has gone on fast forward and I'm forever playing catchup
16) Get help in whatever form you need, I'll admit I ended up needing mental health help, I couldn't cope at several points. A few weeks after Jen's diagnosis, I had a nervous breakdown, was off work for a month, couldn't leave the house for almost 2 weeks, broke out in a clothes drenching sweat walking around the grocery store, even now I still get panic attacks at times, its like balancing the world on your shoulders and all it takes is just a little more stress to tip the balance.
17) You will age mentally, stuff that seems important - going out partying etc, for me at least lost its shine rapidly...I was too wrapped up in adapting to the changes that MS was rapidly dumping into both my life and Jen's and trying to hold everything together.
18) Be glad of tablet based medications, we didn't travel when we could, mainly due to the logistics of travelling with a medicine that had to be kept refrigerated and came in injectable form (and worse right about when the terror scares on aircraft were at their highest and all the liquid restrictions came into force)
I'm going to throw this open now - Please feel free to ask me anything


Wen Baragrey said...

Hi Mr Fuzzy :) I'm a carer too (in a totally different situation and only in a support role, Jen knows all about it), and although our situations are vastly different, I can relate to so much of what you've said here. I've been through the mental difficulties from it, too, and I imagine I will again one of these days. It sounds like you've got things pretty sussed out and you two obviously make an excellent team :) I have little else to offer except a little encouragement. Keep your chin up and take care of you too, you're both awesome :)

Sherrie York said...

MS sucks, no two ways about it. Thank you for sharing part of your unexpected and sometimes overwhelming journey. I'm sorry there's a great big ocean between us, 'cause at least I could give you two a hug. I so enjoy Jen's virtual comradeship and because of it think of you both every single day. I know the struggle is real and intense, and I send you love and energy and strength (and a liberal dose of humor when you need it). <3

Ann said...

Bless you. I can feel the love in your words. Sending hugs to you both from way over here in Boone, North Carolina.

Jennifer Rose Phillip said...

says thank for your comment Wen :)

Jennifer Rose Phillip said...

thanks Sherrie :) *hugs* back humour is always welcome :)

Jennifer Rose Phillip said...

*hugs* Ann :)

Lisa Isabella Russo said...

Big hugs!

Jeanette Jobson said...

Carers take on a big responsibility that can be overwhelming at times, as you've proven. Jen's fortunate to have you in her corner, as you can articulate and argue than anyone the ins and outs of MS on her behalf when she's not able to. And that is a very important role, but very draining too.

I believe there's a certain degree of resentment and anger and why me with all carers, but underneath the stress and fatigue there is love and appreciation and yes, caring. If there wasn't, there would be no caregivers.

Have a break now and then, have a laugh, have a cry and have a friend to talk to. It all helps. There's another person wishing the best for you both on the other side of "pond". Me!

Michelle B. Hendry said...

Jen is really lucky to have you. There is nothing more precious that what you two have together. Hugs to you both.

kaslkaos said...

Mr. Fuzzy, your words are eloquent--mine are awkward but meant seriously. You are awesome. So is Jen. You are a power team.

Sue Clinker said...

You're both pretty special people ... Suex

Shashi Nayagam said...

I can relate to you totally, although my situation is very much different. I have had mental fatigue and stress thank goodness I came to recognise it in time. It could have destroyed my husband and my lives together.
Keep your chin up and support each other that is so important.