Forum

99 today!

Primary progressive MS
#1

NO not me my darlings! (although God knows I sometimes feel it!)

My darling neighbour Huguette is 99 today. A few of us are going to her flat at 3pm for a little surprise tea party. Only half an hour so it doesn’t wear her out too much (or me… MS and old age have many similarities).

I’ve got her box of Belgian truffles and half bottle of Champagne (well Cava really).

Before I go I’ve got a 2pm phone appointment with the bowel nurse. So rather a mixed bag today!

Hope you’re all doing ok?

Chilly with sunny spells in the Big Smoke… clouds scudding across the sky.

Love to all,

Pat x

#2

Hi Pat

Hope you all enjoy the tea party, please wish your neighbour a very happy 99th birthday from me. We have aneighbour opposite us who is 97 and although mobility is a problem for her, “up top” she is as bright as a button, she really is lovely.

Hope it all went well with the hone call.

Cloudy and cold here today.

Pam x

#3

Hi Pat, enjoy your get together later and I hope she has a lovely birthday :slight_smile:

I’m beginning to think every day is a mixed bag at the moment. I spoke to ms nurse last week as was hoping to try Sativex as just about everything else makes you tired so surely it couldn’t be worse (GP at surgery said he had no iuues but was specialist so get someone to give him a steer)… my neuro (no less!) recommended taking a higher dose at bedtime and initially I thought that was bonkers as I don’t have any issues at night then i thought maybe it would really relax my quads… 6 days in and it’s awful, walking with peg-legs and they keep giving out on me with steps, even low ones. What next, gabapentin or tizanidine? Waiting for a call.

Trying to get another contract, tougher work and staying away from home but better money and good for CV… again, waiting for a call.

Hubby is ill so not in a good place :frowning: but we did have a lovely visit with Hannah in Norwich :slight_smile: First time in wheel chair was OK but cheap chair plays merry hell with your bladder and husband pushing me back to hotel after a bit to drink made me laugh so hard that the Hug kicked in and I could barely breathe or contain myself lol. But we made it with no major incidents :wink:

I am otherwise OK but wish the world would catch up ASAP so I can get on huffs

Hope all’s well with everyone else :slight_smile:

Sonia x

#4

Was lovely. There were 7 of us and only stayed half an hour as could see she was tired (her god-daugher stayed to clear up)… but she was happy and pleased. We sang happy birthday and ‘21 today’ and had chocolate cake. Many cards and flowers.

It was very moving actually as she is now very frail and I think unlikely to see another birthday.

Pam, she was ‘bright as a button’ until very recently. We should all be so lucky eh?

Sonia, sorry you seem to be juggling so much. Hope things improve soon. I often get HUG when I laugh… always reminds me of ‘Only when I laugh’!

Rest time now before bingo tonight… I tell you, sometimes it’s all go in sheltered housing!

Pat x

#5

Aw, glad it was fun and she enjoyed it :slight_smile:

Just had a call and new project is ‘on hold’ which is just as well as we’d been told the start date was non-negotiable and we’d already said no way to that rolls eyes

So, just waiting to hear about the peg-leg situation really,even worse today so gonna try a warm bath and massage the pesky things :wink:

The ‘Only when I laugh’ hits the nail on the head, perfect! :smiley:

Sonia x

#6

You all seem so busy. Pat I’m glad your birthday tea went well. Little things like that mean so much to the elderly. I used to work in a nursing home and we’d put a tea together for everyone’s birthdays and they’d be so pleased. We’d invite family and other residents and the staff would all go when we could, it was lovely.

Sonia you always seem to have so much on the go that you make me feel pathetic sitting here aching and I’m retired, though only in my forties. I hope things work out with what you’re currently negotiating.

I’ve been re-covering a very sad, neglected, old fashioned pouffe I found in a charity shop. I love recycling old or neglected things. I’ve actually got two pouffes and I’m doing them to match in colour but they’re both different in style. I’m going to replace the now tatty bean bags in my living room with them and then redo the bean bags for the bedrooms in the new house so there’s no rush getting them done, I just love pottering with things. I’m really stiff and sore though at the moment so it’s slow going. There’s always tomorrow.

It’s really grey and cold here in the Lakes so I’m hibernating.

Take care

Cath xx

#7

Aw no Cath, if I could take my foot off the gas pedal I would! But unless that lottery win happens really soon it’s gonna have to stay that way for a bit longer :wink: Truthfully I’m really scared that if I let MS floor me, I’ll never get up again so I feel like I have to keep pushing!

I’ve had my MS nurse on the phone this morning and at least they’re doing something… we talked for a couple of minutes and she’s going to speak with my neuro and get me in to a clinic pronto :wink: Fingers crossed eh

Hope we’ll get to see pics of your handiwork very soon

Sonia x

#8

Sonia I really admire you. You seem to climb your hurdles really well. I’ve realised that retirement was appropriate for me. My work as a nurse was too stressful and physical. I did have a go at admin for nearly a year but it was too stressful with people phoning me at home at all hours and fatigue is a big part of my symptoms.

I’m also terrified that if I stop and allow the ms to take over, I’ll become worse off. I’ve turned my box room into a craft room and do all sorts of things. As I’ve no arty experience or ability I’m self taught, going through pictures in magazines, library books and the internet and just try things, sometimes with success. My best friend loves doing all this too and because neither of us have healthy budgets we trawl charity shops and buy old bedding, curtains and furniture and do them up. Last year my Christmas budget was extremely meagre so I made family and friends gifts like aprons, oven mitts and hand towels, shopping bags etc. I also enrolled on a sewing course and have learnt so many new techniques.

Anyway enough about me. I really do think you’re brave keeping your job which sounds quite demanding and stressful. It’s awful dragging yourself out of the house when you feel like you could sleep for a week, or phoning in when you really can’t make it, then spending the day unable to relax as you feel you’ve let them down. By the way, I hope you don’t mind me asking but what’s this clinic you’re going to for? If it’s personal I’m sorry, ignore me or tell me to mind my own business.

If I find a way I’ll send you some pics of my projects when they’re done.

Cath xx

#9

Cool about the piccies, I look forward to seeing them :slight_smile: Several of my family are into card making and some of them are lovely but I relish seeing something a bit different and more creative!

I think the clinic is just some sort of neuro clinic. I called my nurse last week and told her I hated the Baclofen and was resisting taking higher quantities but my legs felt shakier and did I really have to try all other available options before Sativex? (I know, I’m demanding lol). I felt it was pointless as they all seemed to make you drowsy and on top of fatigue it did make it harder. I’d already had a similar convo with a GP at my surgery and he agreed but as it was a specialist area needed a letter or something from the neuro but he agreed, it sounded like the sane option.

Anyway, nurse spoke to neuro and here I am barely able to walk and worried my legs will just crumble under me. It’s just soooooo frustrating, when I get out of bed I still try to walk and everytime it goes pear-shaped I still try, I guess this is probably denial but I will keep trying for as long as I can…

I am woman, hear me roar! lol

Sonia x

#10

Happy Birthday yesterday for Huguette! Well done her! Teresa xx

#11

Oh Sonia I hope the jelly legs is just temporary and they can do something at the clinic. A lot of people say that baclofen affects their legs or fatigue, luckily I’m able to cope with the jerking, only happens when I’m tired. I take a huge amount of analgesia and my new Neuro was amazed when he saw me. He’d read my notes prior to my visit and expected a zombie to walk through the door, he thought his initial treatment would be weaning me off the meds. As I’m as alert as most sufferers are he changed his mind and as long as I’m comfortable and coping, he’s happy. I’d love to come off a few but can’t cope with the pain I had prior to the regime.

You’re so right keeping trying. I’m frightened to give up and get a wheelchair or use my crutches more often. I only needed my stick sometimes but now it’s a permanent fixture and I don’t want to get reliant on anything else. Aren’t we silly about some things? Anyway keep fighting. I’m fighting with my cushion I’m trying to upholster at the moment. It’ll be worth the struggle.

Take care, Cath xx