MS in all its glory

I bought 4 , for wrists and ankles . I found them good .

My bitch about MS today is I dropped a couple of suits into town for dry cleaning and decided to go to Tesco . Worse idea ever. I was exhausted doing it , though staff were very helpful , as were the staff In McDonald’s . Think I will stick to the local shop from now on .

sorry but would a Dehumidifier help to lower your humidity

Im like that everyday, get totally exhausted doing anything. Very humid the last few days. I can't walk any bit far the last few months. McDonald's is great to sit and refresh and staff are good,iv had to do what you done today a few times myself. Sticking with local shops too myself,it's just easier.

Back after a “technical absence” and a major relapse which landed me in hospital. My mobility was poor even with the rollator, in the end I hadn’t really the strength to hold myself upright, but worse that that my cognitive faculties had declined to where I couldn’t remember 30 seconds ago.

I didn’t approach the public hospital where I attend for my MS as it would have been either as “go back to GP to arrange care” or a 20 hour fluid-deprived wait in a chair. I approached Beacon ED, where there is still a long wait but they found a bed at midnight, and because I was in a poor state of mind and expressed the notion that I might favour euthanasia in Ireland, I was assigned a carer in my room for 24 hours, she could only take a break when relieved by another staff member.

what had happened to render me in this state was a slow lung infection, caused by reflux, building up, GP antibiotics and steroids didn’t seem to be doing the trick. Of course initially the Beacon told me they cannot assess the MS itself, but treating the infection aggressively with IV antibiotics fa e me a remarkable improvement over days and I am as “good” as I was back in January 2023, when my feet first became woolly and tingly all the time. A stick now suffices, indeed I get around indoors without one.

The infection wasn’t severe, except for one day I woke up with quite an asthma attack and coughing sputum, and I had been feeling dizzy. But it was enough to set me back a long way, and living on my own I could no longer take care of myself.

The moral of the story is to suspect there may be an infection driving your deterioration, and to get it treated as aggressively as you can. It might not be something that stands out very much or grabs your attention. It could be lung, sinuses, throat, dental, bladder, infected toenail, digestive.

Funnily enough the lad who’s car I reversed into is a personal trainer. We settled on good terms so maybe he could do up a few exercises for me . When diagnosed I tried a bit of gym but because my right leg is so much weaker nothing seemed to help and all the exercises were two footed ones

the length is fine . It’s probably more my sitting position . My sofa cushion is flattened from constant sitting . And I’m far from fat !

I’m fortunate to be one of the participants this coming week on 8th May in the UK based charity Oceans of Hope sailing event from Dún Laoghaire. Looking forward to it!

I’m hardly able for it , but I say wtf!

out today in Skerries visiting my cousin, who rightly loves a good walk and what nice territory there is out there for it. I brought my rollator, he seemed very disappointed I needed that today, but my arms started to give out badly and I could barely continue and needed a long rest. There was great disappointed sort of concern altogether. Going home in the train a bunch of Polish girls immediately stood up and very kindly ushered me to sit down, I must have looked an absolute wreck!

What’s causing it for me mainly atm is another infection, this time in my throat. The inside of my mouth, especially left side, is numb, as is left side of my face which droops a bit, I managed to cause an abraision when swallowing improperly chewed or rough food, thought it was just a little scratch, but got infected. Any infection very quickly causes half the immune cells to go to my brain in error and cause mischief. It’s a very predictable pattern with me. Fortunately my GP is giving me an appointment today, I I should get better about 4 days after antibiotic is started. A specific blood test demonstrated I had half the number of the typical sub-type of blood cells, a very typical finding in MS, the missing ones being attracted beyond the blood brain barrier like a magnet.

My face and throat are numb for past year, way better than the Trigeminal neuralgia I had before, but I can’t sense things properly in my mouth and they go down the hatch a bit by surprise sometimes and I’m prone to grazing my throat. He had a look down, there’s a linear infected ulcer to the left side going downwards, so amoxicillin will settle it. My esophagus swallow is good in itself, in fact excellent. My left lower lip is tingly and numb too, and I have a bit of facial droop. The right side of my face has the sensation of “electricity” tingling a very specific area. Speech therapist told me this is one of the most common issues in MS. It feels like the dentist has had a good go injecting little bits of lidocaine around my mouth & throat. I tend to bite my tongue and cheeks too quite a lot.

My You Tube of the morning’s sailing experience. There is nothing quite like handling a boat to do you good. You can be quite “decrepit” and still handle a boat, and the Physiotherapy is automatic and rewarding, and the fresh air is supreme. It’s also a I e oi g activity, very well suited to many people with MS. They kept telling me to put the sheet (rope) in the cleats to hold the tension but I found tending my muscle to that gentle extent was very beneficial, and I’m still enjoying the benefits. I highly recommend any of ye taking an opportunity to try a sailing event with Oceans of Hope

Rough weather would have given a good workout 😁 The feedback from participants on the WhatsApp group is that there has universally been a sustained improvement in some symptoms. I’m in the Outer He rides atm, very clear air, did sea swimming from a white totally calm beach with the clearest COLD water I’ve ever seen, haven’t felt as good in a very long time overall! The good air and moderate temperature seems to suit MS very well.

Spent past several days on the Outer Hebrides, was in great shape on day 1, swimming in the beautiful sea at Berneray. Past couple of days started getting tired and unfocussed. Flew from the islands to Glasgow yesterday, planning to see some galleries & museums. My MS had other ideas, this morning I couldn’t even leave the room to go down to breakfast, feet hardly working at all, I’m extremely tired and feeling very confused. Almost as bad as the time recently that landed me in hospital. Nothing to do but stay in bed all day, and take some antibiotics I have for an emergency. I’ve been having the night cough again and flat beds do me no good at all with reflux. I suspect some gastric contents have got into lungs again stirring it all up. At least at home I can raise the end of my bed.

#WorldMSDay #MyMSDiagnosis

This years theme is My MS Diagnosis. A project run by MS Ireland and sponsored by Novartis involves 6 MS patients in Ireland acting as “spokespersons”. We have each written a short open letter which will be displayed in St Stephen’s Green Shopping Centre in Dublin on 28th May, just ahead of World MS Day 30th May.

Yesterday I was interviewed by Irish Independent Health Correspondent Eilish O’Regan, and an article will be featured in due course. Arrangements are being made for broadcast interviews.

Lots of info on activities and information sessions on MS Ireland’s website.

Pasting everything into my blog as I get links.