How are we doing?

Hi guys… very quiet on here. How is everyone doing?

I’m so tired today (what’s new?)

Sat in Big Bertha, my recliner, in dressing gown, watching telly.

My cleaner just left so I have a sparkling clean flat and clean bedding. Lovely.

Grey in London… Autumn is definitely here.

This is in a different font for some strange reason… but might change when I post it and still can’t type after I put a smilie on…

Hope everyone is doing well. Love to all.

Pat xx

Hi Pat,its dull here in Leeds too, i am just trying to do the breathing you told us about,as i am so so stressed at the moment,

i feel ill at the mo, my daughters just had to visit the dentist for 2nd time this week,she has a swollen face and glands,and as a tooth abcess,so i had to look after my 20 month old grandaughter ,whos reached the terrible twos early… my house looks like a bombs gone off…i was at the hospital yesterday with my daughter as shes having tests for crohns,and shes upset with everything happening all at once…

J x

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Cloudy in Castlethorpe. Recovering after bath morning. Particularly hard work today. Now have lunched and will sort out emails etc before a little snooze, I suspect. CDs of my latest project arrived from the copy plant this morning and I haven’t got the energy to even look at one yet.

(info here:!set-list/c1jmr

and if you have an hour to while away this afternoon, try a sneak preview here:

it’s an hour’s worth of speech and music, and is divided into 13 bite sized episodes of about 5 mins each. )

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Quiet here to and dull smileys have changed? They still don’t have a ‘cool’ one that fit/suits me, hard to please? I have a lovely vision of you Pat comfortably ensconced in big bertha. We have spell check double hand stand of amazement, M

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Mrs J… I’m so sorry to hear you’re having a rough time. Hang on in there. Very hard when a member of the family is ill. Crohn’s as you probably know is auto immune like MS. Hope things settle down soon.

Kev, that all looks very interesting and impressive! Going to take a proper look when I have a bit of energy!

M, great to see you! I’ve moved off Big Bertha and into bed. Having a bad MS day. Jeeeez … BUT I didn’t realise it had spell check till just now. Clever you for noticing!

For others… see the box with ABC and a tick? After you’ve written your post click on that and go down to spell checker!!! Wow Weeeee…

Need another rest now…

Love to all,

Pat xx

Hello everyone, quite a nice day here in Teesside. I’ve been shopping with my Daughter out of law (sons partner) and Granddaughter. Grace starts nursery next month and they wear full uniform so we got shoes and uniform for her. She isn’t impressed with the uniform and informed the shop assistant “I don’t like it, I don’t want it”

Home now with pjs on and feet up. I’ve had a little snooze so I need to start thinking about a meal…beans on toast it is thenhope everyone else is having something more interesting. Oh the joys of living alone.

Jan x

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Hi again Pat,yes i know crohns is an auto immune disease like ms,thats what im worried about.shes not well at all,they are saying maybe IBS at the moment,but i think they will find out later on that its crohns,she is showing all the signs of crohns,

​think they take there time with all the tests, a bit like they do when diagnosing ms, she is finding it hard at the moment,and i feel guilty that i cant help like i want to,i try my best,but then suffer for it.

J x

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Hi all

I am a bit late replying, been sleeping on and off all day, feel weak, wobbly, in a nutshell…shite! But hey, tomorrow is another day.

Grey here today, bit like me!! Lol

Pam x

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Can I just ask was there something in the water today, I started the day with good intentions, however after a fight with the Hoover, I had to have a lie down. … And then boom!

3.5 hours have passed and I’m dying for it to be bed time! I feel like I’ve been hit by a huge MS shaped mallet.

hugs and love to you all, I will see you all in the morning… Night

Polly xxxxx

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Just got up been asleep virtually all day and going back there soon.

Love to all x Don


I cant think of any other reason except the change of season… and I have read a few times on here of people thinking the change of season affects them… who knows?

Seems like we are all feeling shite.

Thinking of you all… let’s hope for a better day tomorrow.

Pat xx

Definite change of season here! Central Heating is now on. lots happening here My bedroom is now in the dining room due to difficulty with the stairs, my youngest has now got his own bedroom (he has been sharing with his older sisters for the past year).

I’ve been shopping for a car on the motobility scheme seen that many they started to look the same, after 2weeks I’ve decided on the car that best suits and will be contacting the dealer tomorrow to go ahead. I’m having an automatic with hand controls no foot pedals to manage at all. I feel so privileged to be a benefactor of the scheme I still can’t believe I’ll have a new car, no tax,MOT or insurance to worry about.

I attended the 1st of 6 sessions on Managing MS run through the MS society & the Walton Centre ( neuro hospital) this one was exercise and MS and it was excellent, hope I keep my focus on how important it is to maintain what strength I have left. Next session is on Emotions and MS can’t promise not to cry at this one.

weekly Counselling is going great.

The downside is my legs are driving me crazy at night hot and irritable,uncontrollable spasms in my r foot big toe, my left shoulder still hurts a great deal, wakeful nights along with the usual MS and all it’s gremlins.

One of my girls has undergone some tests over the last year in relation to migraines and sight problems, was seen at the neuro clinic, report back was normal pressure from the 2 L.P’s done, no changes in MRI and CT scans done.

Has since received an appt for the MS clinic in Jan 2015???

So the usual ups n downs here.

Sorry to hear some of you aren’t doing so good at present, sending you all a sprinkle of magic healing dust,

Hope you feel better when you wake.

Pauline xx


Thanks Pat. I can’t sleep now, sitting here wide awake. I am about to start my seventh day in bed. I definitely feel white I know I don’t set the scale very high normally but this is a big bucket of poop and I am sinking deeper.

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Hey Don, stick with it. You’ll be fine soon.

I used to laugh at that definition of middle age- “in a couple of weeks I’ll be feeling as good as I ever did.”

Doesn’t quite apply to PPMS but you will get back to that cheerful, funny Don we’re used to.

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Hi Everyone. Hope you’re all feeling a bit better. Sun is shining in the Lakes and it’s very gusty so the washing’s our on the line. Like the majority of you I’m a bit under the weather, I feel exhausted. I’ve not been sleeping and every day has been up and down to the hospital where dad finally has his dx of MND. A bit of a blow, he was really healthy last Xmas and now looks really old and frail. Plan now is to get him home ASAP, hospital bed with air mattress arrived this morning and we’re just waiting for CPAP now.

I’m having a day off today, getting my house tidy, washing and ironing done before I make us all a good meal. I don’t suppose it helps that I had sedation on Tuesday for my gastroscopy and it didn’t kick in until after the procedure when I wanted to go home and haven’t had a proper rest yet. But hey ho, such is life, the family have done so much for me with my dx, I will catch up with myself one day. Take care.

Cath xx

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Slightly overcast here in the Midlands right now, but am feeling ‘slightly’ better at the moment, certainly not having as many dark thoughts. Baclofen is not working as well as before, as my poor wife is still getting regular kickings from me in the night! Hope you guys are all bearing up. Something to look forward to are the north London and Merseyside derbies this weekend, although I suspect most of you would rather watch Downturn Abbey…

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i always feel bad with the change of seasons, always have, i wonder why this time of year is so bad for us,does anyone know ?

hope we all feel better soon,maybe its the thought of christmas looming…lol

some of you might recall one of my posts about moving house,

i have decided to take the house off the market,as there was a lot of interest in mine,but theres a shortage of bungalows,and i think mine would have sold quick,and i would have been left with nowhere to go…and to be honest the stress of it all wasnt doing me any good at all,i wasnt sleeping much at all… so for now i feel i have made the best decision… hope i can stick to it.cos i change my mind every 5 minutes…

hope you all have a good weekend,whatever your doing…

J x

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Mrs J I did the same thing. I’ve now used the bit extra I had left after the insurance paid my mortgage to redecorate, new carpets and a kitchen with a dishwasher and eye level oven, and I put a loo upstairs in my airing cupboard as I’ve a downstairs bathroom and I’m very happy with friends and family close by. I do love my home but like you thought moving was a good idea. Stress over!

Now sit back and enjoy what you have.

Cath x

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I’ve had a busy couple of weeks at work with lazy weekends at home, but this weekend my husband has gone to London and left me home alone. He and two friends are doing the Cancer Research Shine half-marathon tonight (walking it). I slept in this morning, have had my hair trimmed and am going to a concert at church this evening. Tomorrow I have to do my accounts and filing, the boring admin-type stuff that help me keep life in order.

And I have a few days away with my husband in the near future: something to look forward to, and a much-needed break for both of us.


Hi Pat sunday and the suns out getting sorted so l can sit down to watch Downton to night nice to have it back on take care regards Jan xx

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