A message from my friend Holly, who struggles with MS. She’s not alone, many live like this.

From Holly. This is not my life. I think she’s great and brave and someone in power in the UK should take note.

I’m really not sure how to say all this without sounding like I am having the biggest ever self pity party, especially considering the truly traumatic things some of my fellow friends are having to contend with at the moment.

I am pretty much in meltdown at the moment.

I have always prided myself on my ability to carry on uncomplaining with life, despite MS and its incessant demands. But of course it has all been a facade and now it has crumbled away, I can see that there was no structure behind it, no foundations to shore up the phony edifice.

As my MS has advanced relentlessly my coping skills have receeded at an ever faster rate.

I am engaged in a war of attrition with a body that fails me at every opportunity.

It is with shameful envy that I read on the board about amazing things like the Independent Living Fund, Direct Payments and other council funded help and support some receive . Here I am eligible for none of these things, It would seem that it is yet another postcode lottery. Yes I am fortunate to get DLA, but it makes barely a chink in costs incurred.

So without assistance I try (and try is the operative word) to manage the relentless demands of daily living. As I have no partner to with which to share the load. I have to bear sole responsibility for every mundane household task. But unconquerable fatigue, unremitting pain and an uncooperative body, can render me incapable of even attending to my own basic needs. Washing. dressing. feeding, all the things that the healthy can do without effort, I often do not have the stamina to undertake. If you were to visit, even at 6pm, it is quite likely you will find me still pyjama clad, with unwashed hair, dirty nails and a rumbling stomach.

I live in a flat surrounded by a chaotic jumble which mocks my (dis)ability to cope with a body that fails me daily. It is a Haversham-like shrine to a life that once was.

In my living room (the irony!) is the leaning tower of paperwork which has been growing to the point of collapse over the last few years. It jostles for space amongst the books my diminished powers of concentration and comprehension can no longer penetrate.

I have a wardrobe stuffed full of work clothes for a job I will never again do, going out clothes for the social life I no longer have, clothes for the parties I am not invited to, clothes for weddings. christenings, even funerals, and other markers of shared lives I am no longer part of.

And shoes, so many shoes. All now unwearable on my clumsy, uncoordinated flippers.

Oh and I mustn’t forget the lingerie. Delicate concoctions of silk and lace no longer suitable for bowels and a bladder that have ceased to cooperate.

I have a kitchen full of tins to make cakes in, pans to roast, boil and fry in ,tools to cut, chop, whisk, and stir; all now redundant. A shelf of dusty cookery books filled with meals that will never be cooked, and cupboards containing any china that has not yet been smashed by shaky hands.

And there is the bathroom, better stocked than Boots with unguents, potions, lotions and fragrant things with which to bathe. All remain unused now that the physical effort required for beautifying rituals is beyond me.

And it is amongst these wretched remnants of a life that once was, I sit alone, so very alone.

I should be grateful that I still have old friends who make an effort to stay in touch, but I find no solace in these friendships. Their lives have long since moved on and the talk of ascendant careers, holidays taken, lives shared with someone else (admittedly not always perfect but at least they have someone) and the chatter of family life seems like an exquisitely painful reminder of what I do not have and most likely never will.

Above all though, I lack any motivation to reach out from beyond my self built prison.

And of course in this brave new ConDemnation regime, things can only get worse.

There we have it; this doesn’t just sound like a pity party it really is one.

There isn’t anything anyone can say that will penetrate the gloom, but I have some little relief from trying to articulate my chaos. I did not intend to write so much and so honestly but it has been surprisingly cathartic (but I do realise it has been self indulgent).

So a heartfelt thank you for listening my brave, loyal and steadfast fellow friends from a rather rotten fruitcake.

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3 Responses to A message from my friend Holly, who struggles with MS. She’s not alone, many live like this.

  1. Karen says:

    I want this put on telly, put onto posters, screamed from the roof tops. It is the best thing I have ever read for describing what living with MS can be like. I am so fortunate to have a loving husband and a pension, safe from the UK benefit cuts. Even with these assets, I can associate with Holly’s words; I have felt this way. It is real. It is the truth. People should know.

    Thanks for putting it to a wider audience.

    Kx

    • jayblewes says:

      Shout. I wish I knew someone to link this to, but I hope the MSS do this and use it as an illustration for all those who don’t have someone to help look after them.

  2. Sugarplum Valkyrie says:

    That has left me rather speechless, hopeless and helpless. What about sending it to the Minister for Health? Local MP? They all have web addresses. This should be read in parliament… preferably after some bleeding heart liberal has countenenced the supporting of sponging immigrants.

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