How is everyone doing?

Bit quiet on here… Hope you are all doing ok? Sunny and showers in London. My cleaner was here today. He’s the very proud father of a baby girl born 10 days ago. It was a complicated birth, ending in C section, and he spent 8 nights sleeping on a chair next to hospital bed. What a sweetheart (but wouldn’t you think the hospital could have provided something… even a camp bed… for him?). I’ve seen pics. She’s absolutely gorgeous! Hope everyone is doing well… I’m struggling with my usual fatigue. Hey ho… Pat xx :slight_smile:

Hi Pat

I am here, but like you fatigue has been a pain, but if you manage to find out which shop is selling energy, give us a shout kid lol.

How lovely a new baby, could so do with a cuddle.

Take care Pat

It sounds like youve had a lovely distraction there Pat

I think in January it is difficult to be too enthusiastic full stop! It’s just too cold so I just want to eat & it’s far harder to stay positive - But we try

Bad - I have the hump as I think I have a UTI (waiting for test results) and also getting a bit worried about these Dantrium pills so reducing the doseage… the plus side if that I don’t get so tired with them but I’m not convinced about the health of my kidneys/liver. I feel pretty uncomfortable around the middle and do tend to feel a bit wobbly on the higher dose.

Weird - health discovery of the day, my D3 level is a tad high (143), which seems weird but it’s the first time I’ve had it checked so glad I didn’t go mad on supplements!

Good - Been very organised during time off. If all goes to plan, we’ll be starting a new contract on Monday, so crossing fingers that all the checks go OK as that takes a lot of pressure off for the pair of us. Still a little uncertainty but the telephone interviews went really well but the checks are intense to put it mildly. In the last couple of weeks I’ve managed to re-jig all my upcoming hospital appointments so that I can condense to one day a month, which helps immensely too.

Uncertain - Called the PIP people today, they couldn’t tell me the answer, as the letter wouldn’t open on the system… however, it is in the post to me - and so, we wait (hopefully not for too long!)

Coo, I had more to say than I realised! And on that note, I wish you all well and say goodnight

Sonia x

Hi Everyone

Like the rest of you I’m struggling with terrible fatigue but I suppose that’s to be expected. I’m in the process of boxing up my possessions and moving house, it’s finally sold. I’m doing it the best way, I’ve a company booked who’ll pick everything up and move it over for me, but I seem to have amassed a lot of stuff. I’m both excited and exhausted by the move, not only the packing up but the paperwork and phoning around are doing me in, but it’ll be worth the effort soon I hope.

I’m involved with 2 ms research projects, one on genetics and the other’s about pain, it’s good to know what research is being done I think as I know that even though the results might not help me, it should help someone in the future who gets landed with this nasty illness. I was quite embarrassed when the research nurse and my ms nurse came to the house this week though as my house is a fright as you can imagine. Why do people always visit when chaos reigns? I can pack boxes but can’t move them when they’re full so they stay where they’re packed until help arrives. They didn’t seem to mind.

I’m glad you’re all well and when you find an energy source will you let me into the secret too please? Take care

Cath xx

Hello, I’d like to say that my current fatigue is due to taking Christmas and New Year by the scruff of the neck and squeezing every last party-going, wild earth kicking drop out of it, whilst screaming furiously at the sterile gales of convention and normality. But no, it’s just the MS. But take note good people, this Saturday is the fourth round of the FA cup. It is not for the sporting minded that I point this out, but for the fact that when the final whistle blows and you leave the ground (or look out the window) it’s not completely dark. Best wishes, Steve.

Not brilliant Pat - I am going for a gastroscopy on Monday as have been in constant pain from the heartburn. To add insult to injury I have had to come off all my gastro meds for a week before the procedure so they can get an accurate picture of what is wrong! The meds weren’t working that well but were taking the edge off things! It has been really difficult without anything! I am also worried about having to catheterise in a hospital toilet as I will inevitably have to during the time I’m there. I usually only use my own loo, so am dreading it! Will be glad to feel better but there is no light at the end of the tunnel yet! Sorry to moan again gang but things are tough right now! Wishing you all well, Teresa xx

I’d love to give each of you an individual answer… but not up to it right now… However I am sending you all a big hug each. We’re not doing to well are we. Thinking of you Pam, Sonia, Cath, Steve and Teresa and all. Rotten night on telly tonight… and it’s raining… again!!! On the positive side I had new slippers come in post today. Really nice mocasins (oh how do you spell that?) off ebay. Take care and have a nice evening, Love Pat xxx :wink:

Sending you all (hugs))))hopefully to help you to feel a little better, and I hope your tests Teresa lets them know what is going on, so they can give you something to help.

Stiill raining here.

Pam x

Pam, I’m trying to remember the last dry day! lol

I’m breathing a small sigh of relief… we won’t start work til at least Tuesday, apparently my checks are OK but hubby’s were not gonna be completed on time, truthfully… very happy to have Monday off

And I’ve forgetton what else I was going to say?! Have a great weekend everyone.

Sonia x

Good luck for your tests Teresa, I hope they get to the source of your pain. I’ve started catheterising without bags, just insert catheter and drain into the loo when not at home as that’s the easiest way over the toilet. At home I find it easier to sit on side of the bath which isn’t possible when I’m out. Give it a try, works for me, you’re not trying to keep bag attached and you’re less likely to block the plumbing dropping it. Good luck, fingers crossed.

Cath xx

Thanks all for your kind wishes! I will be glad when Monday is over! The problem with catheterisation Cath is that I need a large swivel mirror to see what I’m doing as well as other stuff as I cannot do it without looking. Hope it works out ok! Teresa xx

Good luck for Monday Teresa …I’m glad your dr is trying to get to the bottom of it…it seems to have been going on for a long time now! Hope you don’t have too much trouble with catheterising One if the big advantages…for me…of LDN is that I no longer have to self catheterise. Hope you can have a restful weekend. Nina x

Good luck Teresa, sorry, never realized, I’m fortunate enough to be able to do it without looking, probably thanks to many years of catheterising thousands of other women prior to ISC. The joys of a career as a nurse and midwife.

Cath xx

Thanks Nina and Cath for your kind words. I can catheterise really well but just need a mirror to help. The only time I tried to do it blind I got a UTI, so won’t be trying it again! Teresa xx

Oh Teresa all the best for Monday. Will be thinking of you. Can you take a mirror with you? I used to dread catheterising in any loo apart from my own. The light was a huge issue for me but somehow managed with my own mirror. At least hospital loos are well lit just try not to stress and take your time. Hope the gastroscopy goes ok and you get some answers. Take care Linda x


Hope tomorrow goes OK

Sonia x

Ok, I guess.

Just occasionally sense that the missus often feels as though she wants to hand me back under trade descriptions…maybe she’d be happier with someone else. Who knows?

Take care all.


Clucker, that’s just MS for you methinks! I remember not so long ago my husband mught have joked he was “punching above his weight” and now… I need to be looked after, it’s rubbish and a bit humiliating!

I was shouted at the other day “stop carrying dangerous things around! No scissors, knives, glass or cups!” so at leaast he jokes about it (this was after falling going upstairs carrying a glass of water - I think I almost hit the ceiling, certainly managed most of the way up the wall. Oops

We’re still here Clucker, don’t give up!

Sonia x

Hi gang, Had my gastroscopy this morning. As I hoped and feared everything looked normal. However, they did find that I had bile in my stomach which shouldn’t be there, so I have been given a new med which coats your stomach and hopefully will take the pain away eventually! Here’s hoping! Didn’t have to catheterise thankfully as my bladder behaved until i got home! So I worried needlessly. Thanks for all your kind thoughts. Had to laugh actually as they gave me a sedative before the procedure which is meant to make you dopey but able to follow their instructions. It worked so well on me though that I fell asleep for an hour and knew nothing that went on! The nurses thought it was hilarious! Glad it’s over. Have to have an ultrasound of my gall bladder and liver and a follow-up outpatients appointment! Hope all will be right soon! Teresa xx

Hi Teresa

So glad it went well, I have been thinking aboutyou today, and glad it looked normal and hope the new meds work wonders for you.

Time to rest now, cos I expect it was a tiring day for you.

Pam x