I've been ill before but ...

Primary progressive MS
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I’ve been ill before but …

this time I seem to have lost all hope.

I’ve had gynaecological problems and they removed my uterus

I’ve had ulcerative colitis and they removed my bowel.

I’ve had pancreatitis and they removed my gallbladder.

The neurologist telling me that according to the brain MRI and lumbar puncture (I’m awaiting the results from the spine MRI) I likely have primary progressive multiple sclerosis, I have lost hope that I will ever be well again as there is nothing they can remove this time (my brain?!).

Combined with the urologist telling me that due to urinary retention I’ll probably have to self-catheterise (he’s first going to do a cystoscopy and widen the urethra to see if that helps) and also being referred to a physiotherapist to help with my walking (I fell out the car last week!) and even the GP sending me for a chest X-ray yesterday, I can’t see much beyond decreasing health and medical appointments.

I’m 49, my children have grown up and I thought my life was going to open up now not close in on me.

How do you all stay positive?

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Hi Annah, welcome to the board and sorry you have had such a rough time.

Staying positive is something that comes with acceptance…and acceptance doesn’t happen quickly. It takes time to get your head around MS and especially PPMS as there really isn’t any let up…although important to remember that symptoms can still come and go.

The best advice I can give you is to take it one day at a time. Try not to look into future and try and guess what might happen…after all it might NOT happen! And try not to look back at how things used to be. Try to just focus on what you need to deal with today and what you CAN do today.

It isn’t easy I know but believe it or not it DOES get easier and then you learn to accept life with MS, and then you start to feel more positive. You sort of create a bubble for yourself and start to enjoy what you are able to do. You might find this very peculiar but I’m actually happier now than before I had MS. I think it’s because I had years of symptoms esp fatigue that I was always fighting against. Now I’ve stopped fighting it and it feels like I’ve got off of a sort of nightmare hamster wheel.

Glad you found us on here. This group is extremely supportive and between us we know loads about PPMS!

One day at a time…make it your mantra.

All the best,

Pat xx

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Hi Annah,

I’d just finished writing this when Pat posted her contribution. It’s very similar to my own.

A few years ago my wife and I were running a guest house on the south coast. After 8 years of self employment, the business started to fail as the recession began to bite. We couldn’t afford to pay the mortgage and knew that we would eventually have to hand back the keys to the lender.

Within less than twelve months we lost our home, our income and I exhibited the first signs of, what was diagnosed as, PPMS.

It’s not the life we’d planned for. It’s not the life we would have chosen. But it’s the only life we’ve got.

I watch the news and read the papers and realise that my life could be an awful lot worse. I’ve just swapped one set of challenges for another. It takes time but, like grieving for a the loss of a life, I needed time to get over the grief of losing a lifestyle.

I’m really quite happy now that I’ve ended up with a life that is much simpler and peaceful than the one I expected.

I hope you find your way through to a simpler, more peaceful life too. As an added bonus you can meet some really nice people on this forum, like me & Pat.

Best wishes,

Anthony

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Thank you so much. You’re both very kind.

I can’t imagine how I could get to a place of acceptance and even happiness like where you are. It all feels very very difficult and like you mentioned, I’m just so tired! All I’ve done this morning is shower, I rest before dressing and now I’m trying to summon up the energy for breakfast, although I can’t think what is worth moving for!

How quickly have you deteriorated? I mean in terms of pain and mobility?

Was my consultant right when he said that there is nothing they can do for ppms except help with the symptoms?

And how do you pass your days? Sometimes I can’t even read or cope with the noise of the television.

i hope this is a good day for you :slight_smile:

anna x

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I should add a note to the above; I can think of lots of things worth moving for:

pancakes with fresh strawberries and cream

freshly squeezed orange juice

Cumberland sausage served with a large buttery mushroom and grilled tomatoes

A warm flakey croissant with maybe just a little melted chocolate running through it

But Weetabix or Special K? Maybe not :confused:

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Haha got immediately hungry reading that!

It’s true there is nothing for PPMS except symptom help. Lots of people find LDN helps. Do you know about it?

You have to give it time Annah. I too am very tired most of the time…well ok all of the time…but you do sort of get used to it. For instance you say that you are exhausted after getting dressed. Simple solution. Don’t get dressed.

I only do what is absolutely necessary and then on some days I can do more. With my DLA I pay for a cleaner to come once a week and I send my laundry out to a mobile laundry (admittedly living in London is useful for this sort of thing). I have my groceries delivered and I have ready-made meals delivered frozen from a company that doesn’t use crap in their food.

When I first finished work I researched my family tree. That was fascinating. Now I do needlepoint tapestry which also helps keep my fingers flexible and I find it really relaxing.

I read on a kindle so I can make the text larger. I watch telly but also listen to BBC Radio 4 and 4 Extra…both have dramas and interesting shows.

To tell you the truth Annah I’m never, ever bored BUT it did take me a few years to learn how to live like this.

I first got ill and finished work 10 years ago with a diagnosis of ME. Main symptom then was fatigue. Diagnosed MS 8 years ago. Now my mobility is very poor. Been using mobility scooter and wheelchair for about 6 years…but actually I don’t think I’ve had a lot of progression over last few years.

Hope this helps and please remember it’s early days for you. Give it time!

Pat xx

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Annah,

You clearly have a strong imagination, this can be really helpful. I have surprised myself by how I adapt to each “New Normal” that describes my life.

I have managed to accept some things which I would 100% no way no how, have accepted 12 months ago. Despite being in sub optimal condition I am able to make changes & strategies which get me through. We are all different and every day is different so the challenges, acceptances and strategies need to be dynamic and adaptable.

When I am having a bad time I can always retreat into my head which is full of memories and cheese fuelled imagination which means that I am not subject to limits.

When you have a bad day - let it go.

When you have a good day - bank it and learn from the experience,but try not to think like a techie (me) and expect it to work every time.

Good luck

Mick

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Hi Annah,

How do you get to place of acceptance? Don’t look now but you’ve already started.

You take one step at a time.

Here’s a parable came across recently;

Long ago in a far away land, the King yearned for the deepest secret of the Art of Living Well, to gain its powers and pleasures. He summoned the realm’s greatest wise men and most learned scholars to a royal audience in the High Tower. As they jostled and murmured before the golden throne, the King commanded them;

“Silence! I desire for myself the powers and pleasures of the Art of Living Well. But hard, long practise does not befit a King. I won’t knock for empty years outside Art’s door, rather I will batter it down with knowledge alone! I give you, my wisest scholars, wizards and magi one year to distill for me the boiled essence of the Art of Living Well, as short and simple as may be. Go now and work well – lest your heads pay the forfeit of your task.”

When the leaves had browned and greened and browned again the King assembled the wise men and commanded;

“Tell me Art’s great secret, as short and simple as may be.”

So the oldest and wisest of them bent low before the great throne and his arms trembled as twigs in a storm, yet he held high a scroll saying;

“O King, we have squeezed, scraped and squashed the Art of Living Well down but to a single word, that your majesty can easily gain for Himself the powers and pleasures it may yield.”

The King spread the scroll and read the single word that held all the Art of Living Well. That word was merely this:

I’ve been squeezing, scraping and squashing for a while now. I flatter myself that I’m quite good at relaxing.

All that fresh orange juice, grilled food and croissants sounds too much like hard work. I’ll just content myself with this extended-family size bar of Galaxy, thank you.

Best wishes,

Anthony

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Hi Annah

Welcome to the form, lots of lovely people, all in the same boat, always willing to listen and offer advice where they can.

You have been given fantastic advice above, give yourself time as diagnosis is a bit like bereavement where you feel all sorts of emotions, but eventually acceptance will appear., and it will get easier.

I fill my days knitting baby clothes for special care and maternity at the hospital, reading on a kindle (books print is too small), watch tv, and visits of family or friends, listening to music, and always fussing my little fur baby Alfie, a miniature Yorkie who is 7 and a fantastic companion.

I hope you find help with our comments, any questions, ask away as someone will usually have an answer, take one day at a time, and be kind to yourself, take care.

Pam x

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Morning Annah,

Welcome to the forum.

You’ve been given some great advice. You will learn acceptance eventually, it just takes time!

Take Care,

Nina x

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Can I just say that you’re all such lovely, lovely people!

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Pat me and you live parallel lives lol.

It did take me a few years to get used to having MS, i was a teacher of I.T. and loved my job. Now i use my expertise and help others design web pages, or i even host a few support groups, not so much now but i did at the beginning when i was more mentally able.

I make my life run for me so easy, Oakhouse/Whiltshire farm foods, my trustee microwave, cleaner, my laundry lady, gardener, dog walker when its needed, the only issue i have right now is my husband lol…

I am never bored not really still I suppose at 65 i have led a brilliant life, been there done that, so when i feel tired and down which is most days i can draw on my memories.

I agree with you its early days for our newbie, and it does take time to get into a rhythm of MS.

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Morning Annah, most of the above i have had but young.

5 miscarriages

1 full and final hysterectomy at 27

My gallbladder went septic with a huge gallstone and i nearly died in surgery, so gallbladder out at 25

I have gluten intolerance, constant UTI, and was threatened with bag, but refused.

I went blind 2000 start of journey.

Then lost memory finally diagnosed with two things, Transient Epileptic amnesia (rarer then MS), AND oh yeh after 10 years MS lol.

I sit back sometimes and think hell what else can he throw at me, lol.

Then i see my sister who has just recovered from second masectomy, my brother with Dysautomia, my other brother with terrible rheumatoid arthritis, and friend with bone cancer (she broke her arm just taking off her blouse), and I think hell give me MS anyday lol.

Its a SHOCK isnt it. You are in shock, but it does get easier. Its not life threatening, yes a bit limiting but its how you deal with it that counts.

I eat really healthy thats a start. Lots of coconut or almond milk, for B12, vitimin D, I eat mediterean diet, never drink nor smoke.

Now i am in the rhythm of MS, i have so much to do i am never bored. I am the queen of shopping online lol, i have coffee and cake with my online friends as we moan about our spouses lol, i have found Netflix, and gorging on T.V. series never watched before. Oh dear sounds boring maybe but at 65 i am having quite a good time really.

I used to work 70 hours a week, i ran 10 satellite centres for a small city college, i had 57 tutors under me, i put in professional I.T. qualifications, went through audits, taught I.T. you name it i did it, i was rushing from one place to another. Crikey i remember my blood pressure was 215/115 when i was put on BP tablets lol… I reckon you know god gave me MS to SLOW DOWN, i think he was telling me hey girl either you slow down or your arteries will burst. That was in 2006.

Now my blood pressure is normal at 65, around 124/60, i am so chilled now, i dont let things stress me, not even my family. They either do it my way or the highway. I wont let them upset me anymore, i have gone back to the days of flower power and peace mam lol…

Its cool. There is so much to do and learn. I try to learn something new everyday, just a fact. I find friends a drag as they dont know how to deal with my MS, just treat me normal but they dont, so i find its easier if they just message me now lol.

I do get depressed i would be a liar if i said i didnt.

My saviour was my chickens. Yes my feathered friends. I have bantams. They rely on me everyday, i have to get up to feed them, keep them clean and tidy, they sit with me, they are fun to watch, and they reward me with lovely eggs.

I found i need to have something that relied on me, so it makes me get up. Actually its fun, and my husband enjoys them too.

Enjoy your retirement, you can still do so many things.

But first you need acceptance, then you will be ready to work with your MS. Oops i must get up, my girls are waiting for their breakfast.

xxxxxxxxxxx it does get easier. xxxxxxxxxxx

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Wow Crazy Chick,

you have just reminded me to count my blessings.

All the best Mick

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You’re all so lovely.

I’ll reply properly later. At the seaside with family :slight_smile: x

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Hi Annah

You are a hero, at the seaside with family I hope you had a good day. Difficult to look on the bright side BUT my mantra when ??? hits the fan ‘I can do this’ and I think you can and you know were we are. M x

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Eee Annah, what a lot you’ve been through. It seems so chuffin unfair, but as they say, who ever said life is supposed to be fair?

Then look at what Crazy Chick has been through and come out the other side!

Had a bit of a rough ride meself.

But we’re still here to tell the tale.

And this forum is the greatest place on earth, where we all totally get each other and fling open our arms open wide, to embrace anyone who needs a virtual hug!

Much love Pollyxx

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Everybody on here is so welcoming. It feels nice.

I’m away in Torbay for a week. (I’m really struggling to access this forum on my iPad).

The weather is amazing. I swam or rather floated or rather bobbed about with the waves! It was a relief after walking. What’s with my legs keep giving way under me all the time. As my husband says it just looks as though I’ve had a few too many!

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Tried to post a photo.

I am not sleeping well but I’m enjoying the view :sunny:

Hope today is a good one for everyone :slight_smile: x

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Annah, that looking drunk thing is very common with MS. Actually you can get a t-shirt that says ‘I’m not drunk. I have MS’!

Enjoy the rest of your holiday,

Pat xx

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