This week has been a killer the work in the house is still dragging on , we are nearly there but so much to do the house is a constant tip the children are off thankfully Molly has gone to Rochelles for a couple of nights. I’m so tired that chewing food has been an issue not sure if this is part of the disability , somehow I think it is . I’m very tired and everything is such an effort . My Dad’s not well and I feel awful not being able to get across to even see him . My sister is good she’s helping them and also coming here on the train on Thursday to help me. Michelle and Frazer xx
Oh Michelle you have an awful lot to deal with all at once, it is bound to be dreadfully tiring, which in turn can increase symptoms, I empathise with you.
If you are having trouble with swallowing etc can you have a word with your Ms nurse to put you in touch with a speech therapist, as they can give you tips to help, and you must rest, I appreciate with all what’s going on it’s difficult, but do try to.
Hope you and your Dad feel better asap. Have you had the results of your MRI?
Hi Michelle (& Frazer),
Sorry to hear that you’re having a rough time and that things are still dragging on for you with the work on the house but you’ve got this far and you’re nearly there now just keep thinking of how lovely and worthwhile it will be for you all once it’s finished.
Aww, bless Rochelle she’s so lovely helping out with things and I bet Molly’s excited about staying with her for a couple of nights
As for you not being able to chew it could be muscle spasms in your jaw which might be down to you being very tired and also stressed about the building work but on the other hand it could be down to your MS so might be worth giving your MS Nurse a call.
I’m sorry about your Dad not being so good I hope he feels better soon but please don’t worry as I’m sure he’ll understand about you not being able to get to see him.
Take care and have plenty of rest Michelle.
Twinkle Toes xx
Stress by stealth. We may keep saying we’re ok and we are coping and that it’ll soon be over but it is a devil of a challenge.
The swallowing could well be a result of this as some do find it difficult.
We’re all behind you.
Steve x woof
Truthfully, I found my swallowing did improve after a period of mimic-fasting but that’s very hit and miss as you don’t know if and what is likely to improve!That was more about drinking…I’d gotten to the point I’d have a sip of a drink and swallow before taking the next sip. Still not perfect but I’m able to drink n a more relaxed fashion and gulp repeatedly. However, like Pam, I’ve heard good things about speech therapists helping. Sorry to hear about your Dad, I hope you got to see him ok Sonia x
Sorry things are not too good at the moment Michelle.
Thanks Pam , I’ve not got an ms nurse but have a good gp. I still haven’t got results from the mri scan I had back in May . I promised myself that I wasn’t going to get hung up over it and wasn’t going to chase this one I went for 2nd opinion after advise from a new gp . I don’t want to join the desperate for answer cycle. It is what it is and if I get an ms diagnosis I’ll probably feel some relief from the guilt I feel of not knowing and the “maybe it all in my head” thoughts but I don’t need the anxiety of ‘is it ? isn’t it ?’ When i saw the new consultant i didnt push for more tests and he ordered more with and without contrast, so on that note he will get in touch if he wants to. I think the chewing/swallowing is part of the overall weakness and slowness of messages in my body . Stress makes everything worse . I just end up spitting it out if I’m too tired and leaving crusts ect. Hope you are okay Pam Michelle and Frazer xx
Thanks Twinkle, you are probably right…school hols , being invaded by 5 or more workmen nearly everyday for the last 10 weeks and being disabled …it all adds up . They’ve nearly finished and it does look good . My dads really not good and im really worried,i got to see him on Wednesday and he looked so poorly … its so sad… my big strong dad who could do anything , he looked like skin and bone. My poor mum she’s always had him there, they’ve been married for 55 years. It’s so hard for her she’s scared of losing him. If I’m not as active on here as usual it’s because I’m preoccupied with this. Michelle and Frazer xx
Thanks Steve , you are spot on , it’s just stress , and you’ve had loads of it too. I hope things are picking up for you and you are enjoying your new home . Love Michelle and Frazer xx
Thanks Sonia, I could do with some fasting …maybe ill lose weight too ! It’s funny drinking has sometimes been an issue too I identify with what you are saying , I’d drink but gulp down loads of air and it would hurt , isn’t it funny all of the things we did all our lives without thinking. I think it is stress related though. I got to see my dad on Wednesday and he’s really not good . He saw the consultant yesterday and they are running some tests. Thanks for your message. Michelle and Frazer xx
Aww Jackie, you are so lovely, thanks for the hug , it really helps . How are you ? I know you have loads going on on your life . I think you are wonderful, you are a lovely mum and nana. Love Michelle and Frazer xx
Hope you start feeling better soon. Anne
Hi, my ms nurse said I should try Fampridine (only available privately) it is meant to help with walking and possibly other aspects of PP MS, so I have had my 2 weeks free trial here with me for almost 2 months and haven’t tried them yet, I really have a fear of taking drugs, when reading the side effects it’s quite scary. I was wondering if anyone on here has tried it and could give me some confidence. I was diagnosed with primary progressive ms about 11 years ago and I’m now 70 so a late starter which makes me one of the lucky ones if that’s possible but it didn’t affect me raising my children and some of my grandchildren, me and my husband still look after our latest grandson who is almost 3 now, we have him from 1 after nursery every weekday, he does wear me out but in a good way and he understands nanny can’t walk so good and I think he feels so grown up when I ask him to get my walking stick or zimmer or my phone. We bought our bungalow 3 years ago and had it totally gutted and we lived here while it was going on, I honestly thought I would go crazy, a few nights we went to a local pub/ Inn that was if we didn’t have heating or water, we didn’t have a cooker so we did eat out a lot but it is all done now and it looks amazing and we got through it. My walking is very poor now and my left hand is very weak and ms is a bloody pain but I can’t change it so I try to make the most of it, I guess it has spoiled our retirement years we could have done so much more. I hope they will eventually find a cure, I’m sure they will.
sent you a pm Michelle xx
Hi Michelle (& Frazer),
I forgot about this and just remembered now but I have already answered another thread on here in regard to having problems with chewing, swallowing & choking (I have problems with swallowing & choking sometimes). Anyway, this can be a problem for people with MS and it’s called Dysphagia. So if you do carry on having problems this might be worth mentioning it to your MS Nurse, although as I said previously it could just be down to stress as you’ve had plenty of that recently.
I’m glad that you’ve been able to see your Dad but I’m so sorry to hear that he’s so poorly and it’s not surprising you’re so worried about him, and bless your Mum I can’t imagine how she’s feeling especially as they’ve been married for 55 years, it will be very difficult for her.
Sending you plenty of hugs
Twinkle Toes xx
Hi shelly I was into hospital outpatients on Friday past to see gastroenterologist about my swallowing difficulties
I have to go for a barium swallow test to see iff they can spot anything he thinks it is cause by nerve damage
He recommended I try fissie drink with my meals as it introduces air into the osophogus witch helps to make it bigger
Stress won’t help I somtimes have trouble with swallowing my coffee in the morning happening when in company Causes
Stress take it easy .