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MS in all its glory

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  • Registered Users Posts: 147 ✭✭bookworms


    Ah that's a pity gamer. I hope you find an online class that suits. I have been really lazy too since Christmas. The weather hasn't helped either.



  • Registered Users Posts: 73 ✭✭gamerguy1


    Im lazy since Christmas too and don't know why. Symptoms have got worse but MRIs are the same luckily. This weather isn't helping,it's very humid and lots of rain and doesn't help things.



  • Registered Users Posts: 13,619 ✭✭✭✭cj maxx


    humidity is a killer.I used to blame heat but it’s humidity that’s the problem



  • Registered Users Posts: 73 ✭✭gamerguy1


    Heat can be bad if it's too hot but humidity is absolute killer for me. Every day is humid for the last few weeks. Legs are like tree trunks with it.



  • Registered Users, Moderators, Regional Abroad Moderators Posts: 2,198 Mod ✭✭✭✭Nigel Fairservice


    Same here. The heat just kills me. I'm not up to much on warm days. I'm the complete opposite when it's cold.



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  • Registered Users Posts: 13,619 ✭✭✭✭cj maxx


    I bought cooling wristbands but god knows where they are now . And a mimi battery operated air conditioner . Basically a fan that recycles cold water . A good job especially in the bedroom .

    blob:https://www.boards.ie/33872320-45a4-46b8-ba1c-b519a45fbaf9 There was an error displaying this embed.



  • Registered Users Posts: 73 ✭✭gamerguy1


    Do they help in the heat. Was told by nurses to get them. I don't like heat but humidity wears me out completely. I must look at buying cooling stuff for the summer ahead if we get one



  • Registered Users Posts: 13,619 ✭✭✭✭cj maxx


    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 .



  • Registered Users Posts: 147 ✭✭bookworms


    That's rough cj. Thankfully the staff were helpful, it really makes a difference. Can I ask where did you get the cooling wristbands?



  • Registered Users Posts: 339 ✭✭delboythedub


    sorry but would a Dehumidifier help to lower your humidity



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  • Registered Users Posts: 13,619 ✭✭✭✭cj maxx


    I’m after ordering one but it’s from the US , so I’ll have to cancel it Until I remembered I have 110 transformer so happy days , I hope

    Post edited by cj maxx on


  • Registered Users Posts: 73 ✭✭gamerguy1


    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.



  • Registered Users Posts: 13,619 ✭✭✭✭cj maxx


    Does anyone else that uses a cane have bad back pain . I never used to have a bad back until I started using a walking stick . I can’t sleep or sit comfortably ?



  • Registered Users Posts: 810 ✭✭✭tohaltuwi


    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.



  • Registered Users Posts: 73 ✭✭gamerguy1


    Never had back pain using a cane, weak glutes can cause it so maybe try strengthen them and might help. I used 2 canes now and don't get back pain. Get a good physio and they might help.



  • Registered Users Posts: 13,619 ✭✭✭✭cj maxx


    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



  • Registered Users Posts: 810 ✭✭✭tohaltuwi


    Also is the cane the ideal length? Would adjusting length, or getting an adjustable one, relieve back pain? I do know that sometimes the posture we find ourselves adopting can at times lead to a sore back.

    I’m very lucky with my glutes, strongest muscles in my body! 😁



  • Registered Users Posts: 13,619 ✭✭✭✭cj maxx


    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 !



  • Registered Users Posts: 73 ✭✭gamerguy1


    When I diagnosed I did physio with ms society and it really helped me. My right leg was affected too. It was tough but definitely the 2 leg exercises helped me. I'm sitting alot more than I want to these days. Maybe a weak core is causing back pain too, sitting alot isn't good for us.



  • Registered Users Posts: 810 ✭✭✭tohaltuwi


    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!



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  • Registered Users Posts: 73 ✭✭gamerguy1


    That looks like fun and it's for a good cause. Hopefully ye get good weather for it. I've been on a few boats and kayaks and iit was great fun. Wouldn't be able for it now. Best of luck with the day



  • Registered Users Posts: 810 ✭✭✭tohaltuwi


    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!



  • Registered Users Posts: 73 ✭✭gamerguy1


    Warm day yesterday made walking tougher for me. Rollator is a godsend when having bad day. Lucky the polish girls had some consideration for you giving you a seat. We all get them bad days, takes a day to recover after for me.



  • Registered Users Posts: 810 ✭✭✭tohaltuwi


    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.



  • Registered Users Posts: 73 ✭✭gamerguy1


    Yes infections of any kind do cause problems with ms. Must be some gum or gland infection causing mouth to feel numb. Few days of antibiotics will put an end to it hopefully. Your GP was fast getting you in there



  • Registered Users Posts: 810 ✭✭✭tohaltuwi


    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.



  • Registered Users Posts: 810 ✭✭✭tohaltuwi


    Oceans of Hope sailing experience this morning, out of Dún Laoghaire. Promoted by MS Ireland, one fantastic Irish guy with MS has brought this charity to Ireland to provide opportunities for people with MS to experience sailing, and control the boat. I was the most decrepit on this morning’s group, but it didn’t stop me from steering the boat on the optimum course and pulling in the mainsail tight. The hardest part was boarding, but that’s doable with a bit of help. The boat is as stable as they come. Highly recommended!



  • Registered Users Posts: 810 ✭✭✭tohaltuwi


    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



  • Registered Users Posts: 73 ✭✭gamerguy1


    That looked fabulous. Ye got great weather for it,made it alot easier too. Great fun day out. Lovely photos and video of the day.



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  • Registered Users Posts: 810 ✭✭✭tohaltuwi


    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.



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