Hi friends, those of you who have read my previous blogs will know that my poor fibro battered body is still trying to fight off a nasty infection that my lovely gp is battling to beat with different cocktails of drugs and steroids which seem to work until i stop taking them and hey ho, off it goes again....im still fighting to stay out of hospital and so far the new cocktail seems to be working but i know its only temporary as ive got thrush both in my mouth and (ahem....you know where!) also i have big holes in my mouth and tounge caused by infection and its sooooo painful to eat and today ive started with a really sore throat again and earache, which is another sign that the infection is only dormant. gp has been giving me meds to try to boost my immune system but it doesnt look good and i am back there tomorrow night and he says he cant do anything else as an out patient and i need admitting but by god im going nowhere!
well thats an update but my question is this...hubby sadly leaving before new year to live and work in canbada, his dream job and will make us comfortable which in these days is too good an oppertunity to miss! He will come home for a month every 3 so thats good and hes worked all over the world but not for a few years now and i didnt have fibro then (i contracted it after meningitis in 2007) but i am so worried about mine and my childrens safety. my fibro fog is so bad, lwhat if i leave something on? did i really lock all the doors and windows? did i switch all the lights out on my little twiggy things i love so much? did i switch all the gas rings off? is the garage locked and the gates? i will turn into a neurotic wreck! i need a system so i dont turn obsessive and i could quite easily when it comes to safety especially at night. I have whiteboards and a daily planner that i have to write things down for the next day and week but half the time i forget to write on them! I need to know that ive done everything so that i can sleep. i have no probs falling asleep i just cant stay asleep no longer tha 90 mins at a time and worrying is not going to help......i would be so grateful for any suggestions as my eldest dayghter is threatening to come home from uni to look after us and that is the last thing i want as she is doing so well and loves uni life and the guilt would destroy me! i need to reassure her too and quickly! please.....any advice? what has worked for you as memory joggers? Gentle hugs....Charlii xx
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Bit late for me to think about this as going bed shortly,but one thing springs to mind,what about setting your mobile phone to alarm to prompt you to look at a to do list at bedtime..lock front/back door,check appliances turned off ect ect,maybe another phone alarm in morning to check morning list,just covering the basic but important things to do,of course you will need to remember where you put your phone!maybe its something you could try,redo your lists so you haven't got so many,keep them all together in one place, have different alarms throughout the day,just a quick thought..x
Morning Hun you have a task a head of you and I suggest making a list format but you must use it regularly particularly at night time to check you have locked up turned off and all is safe before you go to bed. You can do it and you will find it easier because you are determined to manage it is strange but when there is no one else to rely on you will become the leader of the pack - if you like- something inside of you will take up the challenge and you will be strong and manage brilliantly.
I know this is controversial but as your OH is still working in this country wouldn't it be better to go into hospital for a few days and get the intravenous meds to cure you so you are ewell for Christmas and the new year when you OH goes to Canada My OH had pneumonia a few years ago took to his bed with antibiotics and I nearly lost him, he was taken to hospital at my request , he was still protesting weakly, they got him through the hospital doors where he promptly crashed and he was in resuscitation for 5 hours before getting him to a ward pumped full of drugs to kill the pneumonia and within a week he was home and so much better
I agree with VG you need to ensure your in optimum health before your other half leaves the country. As a fibro suffer we all know how weak and susceptible our immune systems are and infections can set off a flare up leaving us ill and incapable. If you sort out your health then you can be clear headed and focused and hopefully with the help of your oh before he leaves you are able to devise a day and night list which you tick off daily to ensure both you and the children are safe and well. If you have a mobile phone its an invalauable tool for setting alarmed reminders and prompting you in regards to completing a task.
Please take this time to value yourself look after your health and ensure you receive appropriate medical care and attention as too often we wait untill its too late and then we require major medical intervention. Remember your worth it!!!
Hi, I arent a fibro sufferer myself but my son is. but i do have probs remembering things myself now. so i put reminders on my mobile phone. i also have a square wicker basket big enough to sit on my bedside locker.in it i have a zip case in which i keep my asthma sprays. another with my blood sugar testing kit in it. my alarmed pill box . a choc bar for emergencies.my keys go in at night.and my mobile phone.plus a dog whistle. and a small torch.the kind u dont need batteries for. yu just push something with your thumb to get it going. it all arranges neatly in there along with my watch and specs.
i only have 2 routines. morning....i do things in same order so i dont forget....i.e. do my peak flow, write it down (i make my own charts for that and fasting blood sugars)take my sprays and a tablet i have to take half hour before eating. set my pillbox alarm for 1 hour.do fasting bloods. write those down (charts i keep in bedside locker with meds ,book im reading and reading specs.etc.) then bathroom , dress, comb hair ( even brush the dog as he comes for me to do that soon as i pick my comb up,lol). open curtains. put dogs step ladder up so he can get to see out the window (a kind neighbour made it for us) into lounge. turn pc on.& cctv.(my window to the world outside my bungalow as my lounge is at the back so i see nothing otherwise.) pull back kitchen and lounge curtains. then unlock door and let dog out. then breakfast,.take antihistamine after breakfast when pillbox alarm goes off.rest of day i take as it comes.
at night its turn pc off. take dogs steps down. pull curtains. loo. undress.peak flow and meds..(again always taken in same order so none forgotten)put the next days meds in pill box. check reminders on mobile so i know all been done that day and for following day to start imprinting these things on my mind.delete any unwanted texts and reminders. put watch,pillbox and specs in box. then i can settle to read my book and give my dog his nightly cuddle (he has to have that or he sulks). its long winded but with all i have to do or need to do. it takes half hour to get ready for bed or to get up and be ready to get breakfast each morning.. i think well spent if it means things dont get forgotten. my door is always locked once the dog has been out for his last wee, (he reminds me to do that.) and curtains closed when i see its got or getting dark.dogs dinner is the one thing i have been known to forget in summer/ i usually put it out when im preparing mine but in hot weather im wary of doing this as he never eats till evening.but if i have to leave it til then i often forget till he starts prancin around me and being a nuisance. takes a few minutes for penny to drop even then.
wouldnt be without my wicker box. its been a godsend.
oh and i always have the box with me in the lounge on my desk during the day too.and carry it back into bedroom at night. amazing how quick you can get used to doing things in same order till it becomes 2nd nature and you do it without thinking.
Thanks for the advice everyone and hugosmum, i think getting into some kind of routine now is a good idea, as is the box with essentials in during the day and night. I think im aoign to give these ideas a go...i need to get in a routine, so i can stop worry so much at night. With regards to my health im just getting ready now to go and see gp so will let you know later how i get on.Im still far from myself but the worrying thing is once i complete the course of steroids and antibiotics a week later im so poorly again....the meds just seem to stop it temporarily, not actujally cure the infections and they are spreading to all areas of my body.....i haven tbeen able to kiss my hubby or kids for over a month now and its awful.
Once again, thanks for your help and will post soon....gentle hugs..Charlii xx
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