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    • pollyanna 26
    • By pollyanna 26 11th Sep 16, 9:56 PM
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    pollyanna 26
    OS ways and Poor Health
    • #1
    • 11th Sep 16, 9:56 PM
    OS ways and Poor Health 11th Sep 16 at 9:56 PM
    Earlier today I joined a very good new thread on getting back to old style ways . I managed to take it in another direction by mentioning how ill health can impact on doing everything the old style way . As this was off topic to the original post . I will be posting on the original topic but without going off in another direction
    This seems to happen a lot of the time across the threads as many old stylers do have to cope with this problem .
    Many moons ago PREPARE AT HOME began a lengthy thread on being os with health problems and there have been a couple of other threads over the years .
    I am wondering if the time is right for another thread on the subject with the proviso it is not offering advice on medical subjects as that is for the professionals . We all do many things day to day to minimise fatigue and pain and though they are little things we have developed them to cope and others may not be aware of how helpful the little changes can be .
    I would be interested to see if others would like to join such a thread . I am not very techie as you will gather from my rambling post and have never started a thread before - I hope this posts !
    polly
Page 91
    • Prinzessilein
    • By Prinzessilein 10th Aug 18, 1:29 PM
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    Prinzessilein
    Afternoon all!

    I hope folks are not suffering too much in the heat!

    We have thankfully had a few cooler days - it finally rained yesterday!

    I have also managed to work out a way to have a window slightly ope overnight...I have a window in the bedroom that opens by the head of the bed...so I open that slightly...and on the windowsill I have an assortment of small ornaments and vases et.c...I defy anyone to sneak in overnight , stepping through the window, avoiding the ornaments AND clambering over the bed with me in it ...all without wakening me? Not likely!

    I bought a second wig this week! A shorter style, darker brown colour than the first, and with blonde/gold highlights..I now have a choice of hairstyle when going out and about!

    On a less cheerful note, I was at the skin clinic recently...and the specialist has booking me in for a 'minor op'...they have found a lump - unlikely to be anything 'serious' they said, but given my family (and personal) history they really don't want to take any chances...so it will be removed and examined in a week or so....All going well, I should be able to have it seen to as a day patient and recover at home.

    Right..that's me just about caught up...I have towels in the laundry room...I need to go and pop them into the dryer.

    Supportive gentle hugs to all!
    • LameWolf
    • By LameWolf 11th Aug 18, 12:48 PM
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    LameWolf
    Next fun thing (not) - Mr LW had a letter from the "Parkinsons Disease Clinical Specialist" introducing herself. Long story short, he emailed her, and she's coming to visit him at 16:00 next Wednesday.

    I am unsure what this will achieve - though hopefully she can help with getting the GP surgery to get their act together regarding his prescriptions - but I am now on extremely high anxiety, as I really, really don't like having people coming to the house.

    Hoping I can get away with hiding in another room - it is, after all, him, not me, she's coming to see. Just as well we don't have any dogs here on Wednesday.....

    She also included a leaflet with her letter, which really gives no useful info whatsoever; all it does is talk about "support groups" (which, from my experience tend to be glorified pity parties) and activities like a singing group for instance, which is something he'd never in a million years do.

    I don't get it - this stuff slows you down so that you can't even get your normal things done, let alone have time to attend groups and stuff like that. Also, if the only thing you have in common with the rest of the group is having the same illness, how does that work? If it was a group for "Computer Techies with Parkinsons" for instance, it'd make more sense.

    Sorry, I'm waffling, but I needed to write it all down in a safe place. Feel free to ignore me.
    LameWolf
    If your dog thinks you're the best, don't seek a second opinion.
    • Prinzessilein
    • By Prinzessilein 11th Aug 18, 1:01 PM
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    Prinzessilein
    Oh Lamewolf...I do feel for you!

    I totally understand the 'not liking visitors' thing...I don't even really like relatives coming!

    And don't get me started on 'support groups'!...I have had MORE than enough experience to know they are 'not for me'!

    Feel free to waffle away! A good vent can be therapeutic!

    I do hope everything gets sorted - especially the meds - with the east possible fuss.

    As for the 'just as well we don't have any dogs on Wednesday'....could you not arrange for a nice large Alsatian to visit? (Soft as butter on a summer day...but people are terrified of them in general!)...I have a slightly evil side to me that creeps out on occasion!!!
    • lessonlearned
    • By lessonlearned 11th Aug 18, 1:33 PM
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    lessonlearned
    Support groups? Pah!!

    The only thing I find they were useful for was as source of information. That was only because my husbands condition was so rare and they was no literature. Now, 12. Years on, there's been more research and there's loads of stuff on the internet.

    With conditions like Parkinsons there should be plenty of published research available. And just like MSE there are plenty of forums dedicated to Parkinsons, so you'd probably get far more help and support there.

    Anyway, hope she can help with practical stuff, like getting his meds organised.
    • LameWolf
    • By LameWolf 12th Aug 18, 1:06 PM
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    LameWolf
    Prinzess strangely enough, in nine years of dog-sitting, I've never yet had an Alsatian to stay! My next guest is a Staffy named Cookie, arriving on 22nd August.

    We had a "meet'n'greet" visit this morning, which I don't actually think will result in a booking - the puppy's owner actually admitted she doesn't really want to attend the wedding she's been invited to which would necessitate her having the pup looked after for two nights. Still, she did say if she does decide to go, she'll book us for dog care. We should know for sure by Tuesday.

    I now have to get my equilibrium back after that though; I bluff my way through ok, but it takes it's toll on me for quite a while afterwards.
    LameWolf
    If your dog thinks you're the best, don't seek a second opinion.
    • candygirl
    • By candygirl 17th Aug 18, 5:31 PM
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    candygirl
    Hi everyone.I've not been here for yonks.My health still isn't great, but wanted to tell LAMEWOLF that i've got another staffie pup called Zeus Yep I know i'm bonkers, but Bonnie needed a playmate
    "You can't stop the waves, but you can learn to surf"

    (Kabat-Zinn 2004)
    • pollyanna 26
    • By pollyanna 26 19th Aug 18, 4:30 PM
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    pollyanna 26
    Hi everyone I'm back . Virus went to post viral which went on for weeks . We managed to stagger to various appointments and nothing more .


    Wolfy I haven't really caught up so wondering how Mr LW is managing on the med . Hopefully it will have improved his mobility somewhat . How did things go with the home visit with the clinical specialist ? I hope you just sat in the garden while she was there weather permitting .


    Have read your post AOT , any further progress happening ? It seems to be taking them a long time to act . Meanwhile I assume you still don't have your needed meds .


    I notice LL and candy have posted and candy has another staffie . Welcome to Zeus .


    Thanks everyone for your good wishes . I'm going to read back properly now . At least most of us seem to have had some cooler weather so hopefully have had better sleep .


    See you later

    polly x
    • pollyanna 26
    • By pollyanna 26 19th Aug 18, 6:22 PM
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    pollyanna 26
    Prinzess I'm glad you found a solution to getting some air into your bedroom . My dd has been very interested in your wigs . She is a trained hairdresser and it was the physical illness that led to her not being physically able to follow it up as a career . Like you she has psoriasis , in her case psoriatic arthritis along with fibro and tendonitis .
    She does have large patches of hair loss but is good at concealing the loss as she has long thick hair . She's keen to know more about the wigs as coping with hair washing and styling is a nightmare especially during frequent flares . I think she's ready to lose the long hair for an easier solution now .


    I hope your usual prep for the festive season is on course . I would really love some of your soup recipes . It isn't at all mse but I haven't kept up the batch cooking and freezing over the last hectic year so soups have been the fresh m&s variety although only when on the 2 for less offer .


    Re the lump I'm wondering if you have a tendency to cysts . I know many including dd do when there are immune problems and rheumo conditions . hers often become infected and our GP is constantly having to fight it with strong abs . if it hadn't been for this viral thing happening he would have referred her for possible removal as she's had a very painful crop occur . We've tried to avoid it as she'll have to come off the MTX temporarily to give her immune system a chance to hopefully fight .


    I had a few courses of acupuncture years ago LL . It was for the osteo which was diagnosed decades before the fibro and the pSa .
    I found it very helpful .


    Fibro is really complex . I don't feel any one reason or solution fits all . I agree stress overload does seem a strong factor . Regarding chicken I haven't eaten poultry or pork for decades . I'm not completely vegetarian as I was given a choice of iron injections for life or some meat and lots of pulses . I confess I'm needle phobic so opted for the dietary option . Unlike many with fibro I have never had IBS or food poisoning although my dd has had IBS for years .


    I thinks it's a case of finding solutions for each individual as we vary in what works for us .


    Wolfy is that Cookie who has visited before ? I must say I find it rather rude of the lady who really didn't want to attend the wedding to waste your time . Leaving aside the stress these meetings cause you which she wont be aware of it's downright impolite of her .


    Tink I'm proud of you for raising a formal grievance . Yes it's added stress but good for you having the courage to say stop . It was stressful either way so I hope something has or will be sorted .
    Hoping the holidays haven't been too exhausting and the children have run off some surplus energy during good weather . Not long to next term now .


    I hope maddie , pauline and other posters are ok .


    Take care all

    polly x
    • pollyanna 26
    • By pollyanna 26 20th Aug 18, 12:44 PM
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    pollyanna 26
    Wednesday has that rash cleared yet ? I've been wondering if you've got an appointment yet for the NHS therapy .


    Sorry to hear you still aren't feeling too good candy . Hope Zeus is settling in now .


    I haven't noticed Cranky around recently but it's school hols so I expect she's out and about with the HT .


    LL Have you moved yet ? I've lost track of all sorts recently so no idea if you have or not .


    polly x
    • maddiemay
    • By maddiemay 20th Aug 18, 7:14 PM
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    maddiemay
    Hi Polly and friends, I loved seeing the sun, but the hot weather was just too much for me in the end. On the whole I feel better than I have done for years, but you know how it is, often 1 great day with lots done or places visited and 2 more spent lolling around recovering

    Have recently had 6 month appointments with Immunologist and Endocrinologists. My lovely Immuno consultant is very happy with my progress, as are OH and me. Endos are happy to have a watching brief with the Parathyroid, but has confirmed that the bone scan shows Osteoporosis, I am scheduled for an infusion mid Sept and I said that I was not happy to go onto tablets, (IBS already causes a lot of problems).

    I have managed (with a little help from OH) to reclaim most of one 70 ft border in the garden and I have loved being outside doing it, even though it was scorching, and the feeling of achievement is great. Made a small start on another one too

    OH has finalised booking for a 2 week jaunt in our caravan in a couple of weeks, 1 back near where we lived in West Dorset and the 2nd in Somerset, so lots to look forward too. At long last OH has accepted that I need to just do nothing some days. He is not unkind, but although older than me he thinks that holidays are for doing things, not sitting about, thank goodness he is rarely poorly. We will be packing his bicycle and clothing etc, so he can be energetic while the dog and I chill

    Polly - So sorry that the virus morphed into post virus stuff, I hope that you are well into recovery. Lamewolf I expect that you are now counting the hours until the arrival of Cookie Our little Westie lodger stayed with us for 10 days while my Bestie and OH were on hols, and the pretty furry one went to them for 3 days to allow for 1 of our long jaunts to the hospital (just under 2 hours journey each way on a good day, and we have to allow an extra hour in case of road delays), she loves being with them and they adore her, so all happy

    Hugs and spoons to anyone who needs them, and good moving house vibes to LL too, I hope that you are out of limbo soon.
    The best thing about the future is that it comes one day at a time. (Abraham Lincoln)
    • cornishchick
    • By cornishchick 21st Aug 18, 5:38 PM
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    cornishchick
    hi Guys
    not been on here for a while. but health and finances mean i am back.
    my health is taking a bit of a noise dive. I am always so tired and the only thing that has helped is following a low carb high fat diet. lots of vegetables. eggs and good meat.
    i have taken my work contract down to a bare minimum, working as relief and I am living on savings and my widow pension. I did this for 2 reasons. I am attempting to retrain so need the head space for learning and placements. and the theory was time off from working would help me heal... not sure it helps,, there are still days where I stare at the course work and have no idea what it wants from me. my tutor is looking into getting me an education support worker for the next term, someone to maybe type things up for me . so hopefully we will see.
    anyway , trying to stock up a bit on some tinned stuff for winter and emergencies. this used to be easy with pulses and rice and pasta. but they are all not allowed on the low carb side, so wondered if anyone had any ideas? vie invested in a few times of steak, green vegetables such as green beans , but that's where my brain dies...
    its good to be back on the OS forum, I already feel like I am taking back some control.
    xxCC
    live, love,laugh.
    living on my memories, trying to make new ones.
    "Sealed Pot Challenge 5" #1841 now I have a sealed tin, anyone got a tin opener?
    C.R.A.P.R.O.L.L.Z #43 cornishchick - laughing first aider and coffee monitor.
    • Elona
    • By Elona 21st Aug 18, 5:50 PM
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    Elona
    CC

    I think pickled onions, gherkins etc might be all right and maybe tinned mushrooms. I think there are some low carb recipes made with flax flour or similar that could be worth a look.

    Nice to see you.
    • pollyanna 26
    • By pollyanna 26 21st Aug 18, 6:13 PM
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    pollyanna 26
    Welcome back to OS Cornish Chick I remember you very well from the old fence thread and others . I recall you weren't feeling too good but that was to be expected following the loss of your soul mate .
    Do you have particular health issues , you may have said in the past but brain overload and fibro fog freeze my memory every now and then .


    I actually popped online to deal with a pm and spotted you . I'm about to eat so will be back in a while same for maddie .
    polly
    • cornishchick
    • By cornishchick 21st Aug 18, 6:29 PM
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    cornishchick
    CC

    I think pickled onions, gherkins etc might be all right and maybe tinned mushrooms. I think there are some low carb recipes made with flax flour or similar that could be worth a look.

    Nice to see you.
    Originally posted by Elona
    thank you Elona , of course, why didn't i think of pickles , and olives of course.. I use coconut flour at the moment , i need to find a good price on that..




    Welcome back to OS Cornish Chick I remember you very well from the old fence thread and others . I recall you weren't feeling too good but that was to be expected following the loss of your soul mate .
    Do you have particular health issues , you may have said in the past but brain overload and fibro fog freeze my memory every now and then .


    I actually popped online to deal with a pm and spotted you . I'm about to eat so will be back in a while same for maddie .
    polly
    Originally posted by pollyanna 26
    Hi Polly, ironically. my locum has said i have fibro,plus B12 deficiency and underactive thyroid. a trifecta of low energy conditions. i get regular b12 jabs, and i am due a check up for the thyroid next month .
    live, love,laugh.
    living on my memories, trying to make new ones.
    "Sealed Pot Challenge 5" #1841 now I have a sealed tin, anyone got a tin opener?
    C.R.A.P.R.O.L.L.Z #43 cornishchick - laughing first aider and coffee monitor.
    • Primrose
    • By Primrose 21st Aug 18, 6:53 PM
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    Primrose
    Cornish chick, are nuts and avocados on your exclusion diet? If not they may add an extra dimension.
    Last edited by Primrose; 21-08-2018 at 7:05 PM.
    • -taff
    • By -taff 21st Aug 18, 6:55 PM
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    -taff
    Can you not use the pulses as protein? Beans or lentils of any kind?
    • Elona
    • By Elona 21st Aug 18, 6:56 PM
    • 346 Posts
    • 3,539 Thanks
    Elona
    CC

    Snap on the thyroid! Once you get the right dosage of thyroxine that should help quite a bit. I have had several blood clots so am now on a daily dose of medication that resembles warfarin without the need for constant blood tests and diet changes. I have weaned myself off anti Ds after about six months on them so trying to eat sensibly and not get worked up about things.

    Don't forget you can make a "wrap" with eggs beaten thinly and cooked in a frying pan then cooled. If you can have bananas they are great frozen and processed into ice cream.
    • pollyanna 26
    • By pollyanna 26 21st Aug 18, 7:01 PM
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    pollyanna 26
    There are a few of us here with fibro and other conditions CC . Are you on any prescribed meds for the fibro ? It's had mixed results here but it has been working well for my youngest .
    It's normal with fibro to lose track of what you're reading or even saying sometimes so some support to help with your course could help a lot .
    I'll have to give some thought to low carb / high fat foods . I can manage most foods as I seem to have been spared the IBS that often comes with fibro . DD has been vegetarian for many years .
    Lesson Learned often posts here and has tried lots of different food plans and Wednesday has too . Glad you're getting the B12 something else some here also need .
    I'll have a think about store cupboard stuff first . The less effort the better with food when you have three conditions that drain you and a whole new future to plan . Very wise of you to scale back and pace yourself as much as you can .
    Is there scope finance wise to do a little batch cooking which will depend on a freezer and enough energy to do it ? Some days it's a blessing to have something to reheat .
    polly x
    • pollyanna 26
    • By pollyanna 26 21st Aug 18, 7:14 PM
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    pollyanna 26
    I was wondering about the pulses too Taff . Such a good protein source and vitamins too . I pack lentil soups with loads of different veg to freeze in portions and bean salads are quick and cheap .
    I learn something new everyday Elona that wrap idea is a new one for today .


    It's good to see you Prtmrose how are things with you ?


    I'll have to read your post again Maddie - brain fog !


    pollyx
    • maddiemay
    • By maddiemay 21st Aug 18, 7:48 PM
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    maddiemay
    cornishchick - apologies if you are all genned up with regard to B12 depletion/PA and treatment, but I have copied the following from a post I made on "The Fence" diary yesterday in case it would be helpful to a newly diagnosed poster. Polly - I know that you have seen it

    Quote
    Another de lurking PA sufferer here, diagnosed 19 years ago, after a few hiccoughs in the early months, folate and then iron dropping badly I was fine on 3 monthly for a number of years. Then started to fall apart and asleep after 6 weeks or so. Eventually GP agreed to 8 weekly injections and I was all set for a fight to keep them when I moved here, but nurse practitioner I saw said that they carry on exactly the same

    I started to develop other auto immune conditions and also a Primary Immune Deficiency and went back to feeling cold, fatigued,etc, GP was not forthcoming on more jabs and did not want to rock the boat because they were great with all the new major stuff.

    I am now another of those who buy supplies from reputable suppliers in Germany and all the accoutrements from the UK and self inject as I feel I need it (I do sub cut, which is OK'd by the PA Society and I had been trained by the Immunology people to sub cut my weekly infusions of Immunoglobulin).

    Most GPs do not seem to be aware that for the B12 to be utilised our bodies need good levels of Folic Acid (just in range is not sufficient), Ferritin too, also foods rich in Potassium at the time of injections, Magnesium too I think. As Mardatha has mentioned PA Society - masses of information and help available there.

    Nursemaggie - I do hope that you get your loading doses soon and frequent injections thereafter, the feeling of being freezing cold is horrid and very difficult to overcome, it took quite a while to improve and this year in the heatwave is the first that I have worn short sleeve tops in donkey's years.

    I will go back to lurkdom, but continue to smile at all the animal goings on - assuming that there are any left alive, you are a lovely bunch of people. End quote.
    The best thing about the future is that it comes one day at a time. (Abraham Lincoln)
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