Black Dog

Everyday living
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Today really is a black dog day for me and I just need to bleat a little. Dxd last June, ambulance into A&E with right side paralysis Saturday morning, told I have RRMS Monday morning. Relapse in September left me with significant walking difficulty and use a crutch. Second mri brain in Feb this year showed no change since first one last year. Delighted! However, since then I am needing to use a wheelchair when I’m outside. Only this week actually. Reading up on it on here, all the signs are pointing to RRMS. I’M 56 btw. I feel this whole MS thing has got a gallop on and gone from 0 to 60 in no to at all.

The tears flowed this morning. I’m scared I suppose. Mobility deteriorated so quickly. Thankfully we live in a small bungalow/cottage without a mortgage, but we do have an acre of garden! My wonderful husband does a lot but today I’ve had a bit of a reality check. He has fibromyalgia for 10 years now and it’s taken him a long time to come to terms with the things he can no longer do. I’ve taken a trip down the “what if” road today. What if it’s PPMS, what if I get so much more disabled, what if I have to give up driving, what if we both struggle with shopping, cooking, housework etc. He tells me not to worry, we’ll cross that bridge when we come to it, IF we come to it. I’m a worrier by nature anyway! He tells me he doesn’t mind the extra load and so far, we’re doing okay. I’m no longer the active, happy, outgoing person I was and I’m angry. I think I’ve hit the “why me” phase. Normal feelings? Thanks for bearing with me anyone who’s reading this far.

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Be angry, it’s so not fair, have a good rant. Fight to hold on to everything you can, walk when able, wheelchair when not so able don’t let the MS monster beat you. This to will pass. PPMS is not the end of the world some days it bites worse .

Distract yourself and don’t read here all the time do something else. I’m going to start a new helpful post M

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Poppy,

I am sorry to hear that you are having a bad time of it. You are fortunate to have a supportive husband.

I am 62 with PPMS and I can sympathise fully with the effects of a rapid decline in mobility can bring. In my case, the burden falls on my dear, capable wife and our lovely daughter who is currently living with us along with our 20 month old grandson. I have given up driving and use a rollator for short ,but very slow, walks and a scooter to whizz about town.

I have taken early medical retirement and I have been awarded both the standard daily living allowance and standard mobility PIP. The extra income is invaluable.

Have you made contact with your MS nurse and Occupational Therapist? The latter can assess your house and arrange to instal aids about the house, such as grab rails, raised toilet seats and so on. My MS nurse is a lifeline and will provide you with very useful advice on such essentials as DMDs, as you have RRMS.

Have you applied for a PIP? It is not means tested so worth a punt. If you have a local DIAL service, it will help with the dreaded application form.

The PIP income could always be used to employ some help at home and in the garden? An acre is a lot to manage unless you have created a wildlife meadow, for example?

I do hope you start to feel a little better now that Spring is upon us. I wish that I could offer some more comfort. If you have already done what I suggest, then I am sorry to bash on about the bleeding obvious.

Regards,

Alun

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I always said to myself i would deal with things IF and WHEN they happened and thats what i have done for 24 yrs of MS,i made the most of what i could still do and adjusted over the years,i learnt to drive aged 38 because i could not walk more than a few yards ,and then i had to give up driving because of cognitive problems,i had to make the decision and it was the right one,to make as i wasnt safe enough to drive anymore,that was really hard it was like having my independence taken from me for the 2nd time,but i got used to that too,i had to.

Try not to second guess what will happen, you might reach a plateu and not progress much at all.I have progressed over the last 6 yrs or so,and i am ill and housebound, but i have adapated to that too.It doesnt bother me much that i hardly get out,it bothers other people that i cant and i get ‘oh i dont know how you can stand not being able to get out,it would drive me mad’ so i just roll my eyes.We have to play the cards we have been dealt with.

J x

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Have you thought about a treatment that might stop your decline? I’m about to go on Cladribine in the hopes that I won’t get any worse from here. I’m 50 and am struggling to walk short distances with two sticks. I’m using a wheelchair or scooter outside.

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Thank you M. I’ll look out for your post in a minute.

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Thanks for taking the time to reply Alun. Hubby is 62 and uses a rollater. :slight_smile: He really is a wonderful man. Always has been in our 29 years together. I am indeed fortunate.

We live in southern Ireland. Our house is in a fairly rural area, down a short lane. I’m not sure either of us could manage getting a scooter into a car if it ever comes to that. :slight_smile: Things are a bit different over here in regards to financial help. I don’t understand when people on here talk about and so on. I’m getting dla and hubby gets a carers allowance for me. I’m extremely lucky to be able to work pt from home with hours to suit myself and no pressure. This will end though in eighteen months when my contract ends. It cannot be renewed.My mms nurse has to be shared by the (only) neurologists private and HSE patients. She makes me feel like a poor relation as I fall into the latter category. I have a brilliant MS Community leader that I met some months ago. It was her that got the OT to visit and through her I got the wheelchair last week. I get to have an assessment with someone tomorrow, to try to get a mobility allowance. I’ve been told one almost needs to be without arms and legs in order to be approved! I won’t hold my breath.

You’re very sweet Alun, thank you again. I’m sitting here in my conservatory, in the sunshine and yes, I do feel better. Birds are singing and that old dog may have walked out the door. Well for now anyway. :slight_smile:

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Hello Mrs j. You are so right. I spend a lot of time second guessing! It’s a very bad habit of a lifetime and doesn’t achieve or solve anything. 24 years of ms. Wow. You come across as a very strong lady. Very admirable.

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I’ll have to read up on that Sewing Chick. Not heard of it. I almost had to do battle with my Neuro when I came off my previous dmd and wanted Tec! I check it out. :slight_smile:

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Forgot to add, she nearly choked when I enquired what her take in LDN was! I got the roll eyes, “snake oil” as I expected. I told her I’d get it privately anyway, and I have. Can’t say it’s making any difference.

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[quote=“Poppy6488”]

Thanks for taking the time to reply Alun. Hubby is 62 and uses a rollater. :slight_smile: He really is a wonderful man. Always has been in our 29 years together. I am indeed fortunate.

We live in southern Ireland. Our house is in a fairly rural area, down a short lane. I’m not sure either of us could manage getting a scooter into a car if it ever comes to that. :slight_smile: Things are a bit different over here in regards to financial help. I don’t understand when people on here talk about and so on. I’m getting dla and hubby gets a carers allowance for me. I’m extremely lucky to be able to work pt from home with hours to suit myself and no pressure. This will end though in eighteen months when my contract ends. It cannot be renewed.My mms nurse has to be shared by the (only) neurologists private and HSE patients. She makes me feel like a poor relation as I fall into the latter category. I have a brilliant MS Community leader that I met some months ago. It was her that got the OT to visit and through her I got the wheelchair last week. I get to have an assessment with someone tomorrow, to try to get a mobility allowance. I’ve been told one almost needs to be without arms and legs in order to be approved! I won’t hold my breath.

You’re very sweet Alun, thank you again. I’m sitting here in my conservatory, in the sunshine and yes, I do feel better. Birds are singing and that old dog may have walked out the door. Well for now anyway. :slight_smile:

[/quote] Talk about PIP, that should have read!

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Excuse the language but LDN did bugger all for me.

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Me neither. I had such high hopes. This will be my last bottle now.

Ishall spend the money on professional waxing! :-)l

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Poppy,

Thank you for your kind words.

The issue of PIP (Personal Independence Payment) replacing DLA has been in the news lately, and not just because of the resignation of Ian Duncan Smith. DLA is being phased out and all existing claimants must apply for PIP. The news is not good so far for people with serious mobility issues as many have not qualified for the higher rate mobility rate under the PIP rules.

It seems you have DLA in Eire, assuming it means Disability Living Allowance. I admit that I have not researched how the system works in the Emerald Isle, but you suggest there is a two tier system - private and health service. I am glad to hear that you have been referred to OT and that action has been taken to help you. It seems like your MS nurse prioritises private patients; 'twas ever thus.

I am glad you have banished the black dog and let’s hope he stays away. I have just taken a slow and difficult walk around the garden, as I do as often as I can. Our garden is small compared to yours at approximately 150’ by 50’ but we do have a stream at the end of it. There are fields beyond therefore we benefit from a borrowed landscape which provides the illusion of a larger garden. We often see the kingfisher and occasionally a little egret.

Taking a slow walk, however, does have its advantages as it offers opportunities for observation. Insect life is increasing and I have seen bees, hoverflies, ladybirds and shieldbugs amongst others.There are newts in the pond along with dragonfly larvae and pondskaters on the surface. Even our lonesome whirlygig beetle has returned.

The somewhat desolate winter garden is transformed and is bursting with plant life. We have a bank of primroses, celandines are everywhere, forget-me-nots, speedwell, fritillaries, cowslips, alkanet and so on. These are the things which make it all worthwhile. I do miss being able to cycle and wandering the lanes stopping at churches on the way. Doing the same by car pales by comparison. However, the garden never ceases to fascinate with its changing seasons.

We had a lovely holiday in County Kerry many years ago; we stayed near Kenmare. We bought a book of local walks and did as many as we could. We were amazed by the diversity and abundance of wildflowers compared to mainland UK.

I seem to have wittered on somewhat but I wish you the very best. Please let us all know how your mobility assessment went.

Alun

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Hello hun.

I know how the mind can take you off and then run away with all the what ifs etc. Mine does that to me too.

Something about the different forms of MS…RRMS can not change to PPMS, only to SPMS.

But having said that, it isnt always certain that you`ve been diagnosed with the type the neuros say.

You do sound like you have a pretty good network of support, with the MS nurse, your hubby, OT and MS community.

My hubby was my sole carer for 11 years. He`s had rheumatoid arthritis a long time, and was recently diagnosed with the osteo type too!

He was struggling more and more to cope, but wouldnt hear of getting help in. I had to go behind his back and arrange it. But after 5 years of help in the form of 3 fantastic lasses and paid for with Direct Payments, we muddle along somehow. He wouldnt wish to go back as we were…me neither!

I am a full time wheelie and am hoisted for every transfer. It has taken a few years to get to this point…quite quickly really.

But I can still enjoy life. It isnt always easy to have to wait/depend on someone else, when all you want to do is a relatively simple thing to others, but is a mountain for me to climb.

Life is a bugger at times, but it`s better than the alternative!

luv Pollx

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Alun, you’re a man after my own heart! I moved from Kerry to the UK when I was a wayward young woman and towards the end, had a house with a garden that I created almost single handedly. Same size, made a winding shingle path through it, (almost killed me during that hot summer!), had a small wildlife pond that provided hours of entertainment, watching the “residents”.

28 years later, I returned with hubby (now 10 years ago), back to Kerry, to a place near Glenbeigh. I love being back home, despite the incessant rain and elusive Summers. :slight_smile:

I’ll keep you all posted on my assessment and it’s outcome.

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Poll. I have read a lot of your responses on the various threads and your attitude ans positivity never fails to amaze me. Even humble me sometimes. I seem to have been going through the “stages of grief” I think. I’ve had the complete denial, the fierce bloody anger, these last few days the (very unlike me) “why me?!” wail. I feel I’ll reach the Acceptance stage very soon, and that I’m sure will make life a lot nicer for me, and my poor hubby too. My MS nurse wouldn’t be my first port of call, at all, but the MS Community lady is just fantastic. Now, my new wheelchair has just been delivered! It is meant to be a really light one, thus easier to manoeuvre self propelling. Better go and see once it’s put together. Thanks for the reply. x

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