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Tania's journal of drug treatments and other ME things

Discussion in 'General Treatment' started by taniaaust1, Dec 28, 2011.

  1. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I understand that this is the case. I'm only borderline Aspie, but I am a little bit obsessive about doing things in a particular order and putting things in a particular place, and I do like things to match and line up, but being only borderline I don't get seriously bothered if things are done differently, just a bit irritated.
     
  2. taniaaust1

    taniaaust1

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    nods.. Im dangerous on chairs too as I can get very sudden severe headspins. I got one while I was standing on a chair a couple of years ago trying to change a light and ended up having quite a fall due to that one. Landed on my shoulder, side on the floor and nearly slammed my head hard into the bottom of the cupboard (just missed it). I now wont stand on a chair without another holding onto me.

    I dont think my specialists are being stupid about the diet they've put me onto.

    I was getting MAJOR reactions from carbs, major mood swings when I breach my diet. Diet breaching (I think due to my MCS my body may be hypersensitive to having abnormally very high insulin spikes.. the hyperinsulinemia I have) can cause me to suddenly go suicidal, into uncontrollable crying or act aggressively and out of control. Ive smashed my elderly friends car window twice now after I breached my diet .. 20 mins after a diet breach it can become a nightmare for me and for anyone else around me (a bowl of chickpea salad can have me actually smashing windows.. actually Im wondering with the chickpeas if I was also allergic to them). Ive almost ended up in major trouble with the police after Ive diet breached due to I can hit someone as I can completely loose control due to it.

    My own nutritionist I see for my hyperinsulinemia, she also has severe issues with insulin and hyperinsulinemia and has to herself stay on an extremely strict low carb diet. My friend can always tell when Ive done a diet breach thou I try to hide it. (im even worst if I diet breach at the same time as I have PMS.... PMS, hyperinsulinemia and MCS together really dont go well together).


    I have had issues at times with teeth suddenly starting to crumble little bits off of the teeth (and went a little chalky like it the places they were crumbling from).. they went like that for a few days but then came normal again.. they've done that a few times. I assume I must of had a severe deficiency going on at the time but dont know what. I am deficient in lots of things (I currently have 4 deficiencies I know about) even with supplementing some things for a year.. my levels havent gone up. It's also been very hard to correct my deficiencies eg my Vit D.. Ive never seen it in normal range the whole time Ive been sick and much of the time has been severly low. At one point it even went lower when we were supplementing. Hospital was giving me monthly mega doses of it. (as I arent getting to my specialists Ive no idea what it is now but it would still be deficient).

    Ive been planning to get one.. we keep running out of time at the shops for me to look for one. Next shopping trip hopefully.

    Cause I drop things such a lot.. I'd certainly end up dropping the bowl of water.

    I have been thinking about that.. My kitchen.. I dont know where I'd put it if I had one.. the only spot it would have to go in Ive already got a grill (I hate gas..gives me a headache easily so dont use stove much so had to buy electric grill), my knife and fork holders, nutriblast, breadboards in that space so all those things would have to go elsewhere (my cupboards are fill hence those things I keep on the cupboard there). I keep a 10L water and microwave on cupboard. too. and have a very small kitchen. Even if I knew where to put one, I dont have the money

    Ive always buying things due to my disability and there is many things Im needing.. Im still also trying to settle into this house too and need to buy things for that still as well eg I still got to get the rainwater tank plumbed into the house (so I can then save money in buying all the water Im buying).

    Thanks.. ideas are always good in case Ive missed thinking of something. im not at risk of getting worst.. I ARE getting worst and have been for a year.. Im having a slow decline due to constantly having to overdo things. Hence why Im trying to fight so hard and desperately with the disability service. Its too hard for me to get back to baseline when that declines.

    Sometimes IF they have a free room, I will be allowed to wait there.. other times I have to wait in the car and they come out and get me.. sometimes the main room will be okay for me to wait in (depends on what others are wearing and what previous others there have worn..a bad chemical can stay in the air for a while)

    . Last time I was there cause of the issues Ive been having eg not good if there is a long wait and a hot day in which a worker will have to leave me in the car with it running the whole time. So we spoke about them ringing me when the patient before me goes in.. as I get too sick if waiting too long. So I think that is what we will be doing in future. (this is at my own GP... at other places eg hospitals it can be a nightmare as hospitals casuality depts dont cater for us and our needs, they do not understand that a severe ME/CFS person will need to lay down).

    Thanks fingers crossed. At this point Im not just wanting things to be fixed but Im also seriously wanted compension as DisabilitySA is responsible for my level of illness all last year. Ive been going throu hell due to them.
     
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  3. taniaaust1

    taniaaust1

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    yeah. Its hard having so many health issues as things affect other things causing more work. Like my support workers will put away my dishes sometimes but I end up (if I are out of bed, often too sick to do this after their visits until the next day or so) moving the things they've put away again eg my glasses have to be lined up in sorts of glasses and with the bigger glasses at the back with the smaller ones at front. (Im not really obsessive compulsive thou.. just how some people like their stuff looking tidy and nice). If I leave things out of order, it will bother me and bother me.. I wont be able to rest and get it off my mind. My plates.. of cause have to be put into their own matched sets.

    Ive eased up on my mugs. I had starsign ones which I use to help me try to remember peoples birthdays for the occassions I get a visitor. of cause I had them lined up in the window in the order of the star signs (actually that did thou also have a purpose as it helped me to find the exact one I wanted easier so less time on feet looking for the right one). I dont expect support workers to be as fussy as I are.. so if Im okay enough, I go around fixing things after they left. Everything in my house has its own spot where I like it to be (hence it drives me feeling like I'll go insane at times with the illness of the ME combined with having Aspergers)
     
    Last edited: Jan 21, 2014
  4. taniaaust1

    taniaaust1

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    The phyiso is coming to see me on Friday (10.30am) to sort out my wheelchair trouble. She said she'll look at my shower situation again too while here (I told her about the broken screen as I fell on it). Last time she was here she asked if I wanted a shower chair till she saw the size of my little bathroom and then decided that one probably wouldnt fit (as I need one with raised legs).

    My friend rang DisabilitySA (disability services) 2 days ago to talk to them about me and to talk to my "point of contact" person there (Ive asked if he can try to advocate for me more and share with them what goes on here).. noone has bothered to ring him back. I'll try ringing Sue (point of contact person) today re getting my home support contract put with a better agency as Helene kept telling me she'd do (but now that she's gone I dont have a clue what this other is doing.. as Sue was going on about one thing at a time, so I guess she's leaving that???).

    i also dont know what is happening about my broken shower screen (she did try to ring me back on Friday about it but my phone wasnt going as my battery recharger was broken so I had to wait to be able to get a new one. I must of fallen on the charger at the hospital when I collapsed). I forgot to ask her what was going on over my shower screen when she rang since about the specialist appointment.

    Ive lost my quote for the gardener service which I was supposed to send into some service (forgot what they are called) who were going to try to arrange my garden to be done. Ive looked everywhere for it :( Last I remember, is I had it sitting on the cupboard.. awaiting the day for the support worker to come so I could post it. I may have to arrange a gardener to come out AGAIN and give me another quote (and the quote is only for a 2 week period.. so Im very unhappy I cant find it).
    ..................

    Im been thinking for the past few days and realise (well Ive known I've needed this for a long time now) I need to buy a medic alert bracelet and alarm I can have on me at all times when its warm. If I had one I wouldnt be in so much danger when the next heat wave hits.
     
    Last edited: Jan 21, 2014
    aimossy, MeSci and Valentijn like this.
  5. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    That's a great idea. I think a lot of us will breathe easier knowing you have that!

    Re the electric toothbrush, my first place to look for things like that would be online, probably Amazon or ebay. I do like to support local shops, but there are times when we need to put ourselves first. I find it so much easier buying things online than from 'real' shops. It saves so much energy and lets me rest my legs.
     
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  6. taniaaust1

    taniaaust1

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    Ive been having a lot of trouble with mail orders of late. I brought some rare strawberry seeds (pineberry throu ebay not long ago and many of them came crushed ... I still go to sort that out and try to some refund

    I still got to sort out another buy I did too (thou one which wasnt throu ebay.. the DVD for my cat toilet training program doesnt work).. emailed them and they said they'd sent me another but then it didnt show up.. that was 6 weeks or so back so certainly the replacement should of been here well before now, so I got to contact them again. Till Ive sorted out my mail order things gone wrong, I dont really want to go ordering more stuff online. (I do actually buy a bit online, just dont food shop there). Actually Ive got a third buy which is an issue to sort out too. (I really get on top of things bettter. Im loosing money for things I buy which dont work and then are left as its all become too hard).

    I do have have a small dept store in my area.. next to my shopping centre. That should sell electric toothbrushes (I assume). so I dont think I'll have an issue getting one of those.

    My next shopping day..I just saw that going to be 38 degrees celicus , so Ive got to figure out something there as I wont be able to go out in that. (umm if I could get the disability service to allow me to use support workers when needed out of business hours if it was too unsafe for me earlier in the day, I could then wait till its cooler and have them come later in the day. That would be far more suitable. I think I may start pushing for that).

    but yeah good idea.. I may of done mail order for the electric toothbrush if I wasnt already currently dealing with things gone wrong with my mail orders.
     
  7. taniaaust1

    taniaaust1

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    Ive spent a lot of my out of bed time day today on the phone. Disability services did ring my housing people about my broken shower screen and told me that I will have to pay for it even if it happened due to my disability. (doesnt gov housing have insurance on thier houses for damage done which isnt a persons fault???)

    Im not at all happy about this! another bill due to my collapses. How much are shower screens worth? Will they also change me for the service call out too?... I do hold disabilty services responsible for the breakage due to me not being treated for my POTS due to them not doing thier job, not treating my issues seriously and helping me get to doctors. Things being broken cause Im collapsing would of been preventable if I was on seeing my doctors to have me on the right meds. Disability services dont see themselves as being responsible (even throu they have breached the law in not helping me more.. I'll add all the cost of the shower screen, to the looses Ive occured due to their law breech to my Equal Opportunity Commissioner compliant.

    I found out today from my new "point of contact" person at Disability Services that Ive now been approved to take me to two of my specialists. I will keep my petition up thou as it still should be a case of me being able to get to all my specialists. I guess I'll have to wait and see thou what they do next and whether they give me the support i need to get to my other ones too. I wont currently thou try to book any more appointments with my other specialists I still need to go back too (other then the 2 approved ones) as its being a nightmare with the weather as I have to cancel appointments now if its over about 30 C as it would be stupid for me to even try to go in that heat. I'll get these two appointments out the way first (not including physio).

    I made an appointment with my POTS/CFS specialist Dr Del Fante (had to work it around the other appointments I have eg physio coming tomorrow..and housing people wanted me home for on a couple of other days as they cant tell me when their person will be coming out to fix the shower screen. I cant rest around planning when they will be here seeing they cant even tell a day, let alone time the person will show up).

    So my appointment with my CFS/POTS specialist has ended up being next Thursday which could be an issue as the weekly weather report isnt yet saying what the temperature is going to be on that day and heat wave before this with it dropping some day before. So ive made the appointment and just hoping. CFS specialist receptionist said its okay to cancel out day before if I need to.
    ........

    The Disability and Advocacy complaints person called today and we discussed what we are going to push for at meeting with Disability services with my new point of contact person. Decided on 3 main points to push for 1/ more support hours which also will include getting me to doctors 2/Take the stupid restrictions off my support contract which dont allow my support workers to take me out of my suburb 3/ oh I forgot the third important thing

    Ive just realised thou that what we are doing isnt going to be helpful as the point of contact person keeps telling me she doesnt know the answers to my questions.. and its the one above her who needs to approve things. I should of told Disability and Avocacy complaints that I need the appointment with someone higher then the one Ive been dealing with as she's not going to be able to answer the questions or do anything. Im currently waiting for her to phone me back to discuss.

    ........

    Im confused right now. I was supposed to ring and arrange a support worker to take me to Thursdays appointment but I dont know which agency my contract has been put with for that (so waiting on a call back to clear up my confusion on that too). I rang an agency and tried to arrange it but then realised they may of been the wrong one. (I'll be so glad when Disability services changes me over completely to a new one.. as while Im now going throu two, its causing me confusion). I think she may of given me a full swap over date (some day early Feb) when I was on the phone to her (my brain is in a daze.. once again, I dont know what we discussed on the phone thou I tried to write it down).

    anyway.. I'll keep struggling away here..doing what I can.
     
    Last edited: Jan 22, 2014
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  8. taniaaust1

    taniaaust1

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    Physio (Jenny from ASSIST) came today.. she was shocked when she found out that Im in the same situation still as when she was last here. Shocked Im still not getting extra assistance.

    She was very concerned to find out that disability services (Helene) hadnt put into place all the things she told her I should be getting (umm was it towards the end of last year?). She told me she'd spent quite a long time talking to her on the phone and thought she would fix things.

    She's now going to ring the person I have now (Sue) instead of Helene. From what she said.. I dont know if she did send a letter into them as she'd told me she would... from our talk today it sounds like she may of just had a very long conversation on the phone and had thought Helene would fix things from there. (this is what is happening..anyone is assuming the state disability will fix things..but they dont). If she didnt also send them a letter, that is going to mean that when the other organisations ive contacted to investigate.. they wont know about the calls others have done there re my case saying I should be getting support and what the disability service has been told. (cause some of my doctors rang too.. thou I know they do have at least 2 letters from doctors).

    I just got informed today that Sue is just a temporary case worker for me.. **sighs** Sue is being far better then Helene..I was hoping she was really going to be my case worker like she lead me to believe when I asked her if point of contact person was case worker. (the amount of different people Ive gone throu in different places while trying to get the issues sorted out is crazy)

    There is going to be a meeting in 2-3 weeks to decide on a case worker for me. (kind of annoying as Ive been getting people to ring Sue to advocate. eg my elderly friend rang her etc and I wont have her in a few weeks). I asked about Helene again and why I now got Sue and was told today that Helene got taken off my case as I didnt want her (cant remember what I last said to Helene in my last phone to her as I was so distressed about all the stalling and not sorting out things going on.. so maybe I did say that, I cant remember (Im glad she's gone). I do know I did tell her about the petition as I wasnt happy with things).

    I asked today who was higher up then Sue (seeing Sue doesnt make the decisions and just the one who presents things to the other).. and got told its the regional manager (someone called Sharon Haylen).. I asked if that would be the person who has knocked back me getting extra support hours and was told no.. it would be the "director" (whoever that is..I'd love to know who that is as that may be another one biased with ME/CFS). Sue assured me thou that the regional manager would know all about my case thou. So I will try to set up a meeting with the Disability Advocacy Complaints person, the regional manager and me.. to answer why in hell are I still not getting the support I need after more then a year etc
    .............

    I phoned my home support agency and asked if I could be taken shopping late (when its cool) next week to avoid the 38C heat. She (I got the Margaret person Ive had a lot of issues in the past with letting me down but on this occassion she tried) rang around but couldnt find a worker for me in the evening (I found out today that my contact covers workers up to 8pm). So its a no go at the support agency. She also tried finding a worker for me on a different day with no luck either (cause not enough from that agency do my area). So there is going to be no safe way for me to go shopping next week.

    (My support contact for the month runs out on Thursday so time not used cant then be used due to the stupid not allowed to roll over rule and I will loose the hours which would gone towards my shopping time and also covers a bit of home support. So once again..there wont be a month I get my full support time Im supposed to get due to the agency Im with, not having enough workers).

    So I decided I'd forgo my weekly shopping outting and try to do internet order for my shopping instead but I then found out that old computer with its dial up connection thou cant load the pages due to all the pictures so i cant do that either.

    So next week I may be without food (im definately going to run out of loo paper!!. Im going to end up having to use flannels for toilet stuff again.. its ridiculous). I just cant risk my kidneys/body by going out in the heat I know I dont cope in and would likely collapse again in even if Im in the wheelchair.

    Hopefully my elderly friend will come on Monday and I'll be able to give him my bankcard and get him to pick me up a few things at the shops. He thou couldnt come today due to his famiily again (He's let me down twice in the last 3 times he was going to come as he ended up not being able to come afterall.. and he may end up not being able to come next week).

    One of my support workers, used to be great and I trusted her enough to give her my bankcard for times like this (she even leant me money at times and I used to pay her back if couldnt go to the bank).. she's thou not at the agency anymore (Ive given my card and password to a fill in worker one time too due to beign desperate and no other options).

    The 2 support workers I got now, they are good but they stick strictly to agency rules and wont take my bankcard/password to get things for me (I dont have cash on me to be able to give to them to go and get things so that isnt an option). I rang agency and pleaded with them today to see if one of the workers could be allowed to take my bankcard/password and go and get my shopping next week..but to no avail. (Yeah they do that to protect clients but what when it then leaves people with no way to get the things they NEED!!! I hate giving out my bankcard and password to people..but a person will end up doing what a person needs to do).

    I hope I wont be left without food AGAIN!! Im trying not to worry about this but it is VERY STRESSFUL! I cant help but think of late last year when that happened and the crying I did over not being able to shop when I needed to do so and running out of food and then eatting rotten stuff (and the fight me and a worker got into over me eatting rotten food.. when she throw away bad food I was going to eat as it was all I had).
    .........

    I found out today that the shower screen I broke in my collapse the other day..is going to cost me almost $200.
     
    Last edited: Jan 24, 2014
    aimossy and Valentijn like this.
  9. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    You absolutely mustn't go without food, Tania. Will a local shop deliver, and can you pay by cheque, or owe it to them, or maybe they have a handheld credit card device that they can bring?

    Re your computer, they are frequently given away on Freecycle in the UK. There are Freecycle groups in South Australia - look here. It's amazing what people give away - TVs, DVD players, garden equipment, clothes, bedding, cookers, freezers, dishwashers, building materials (doors, windows, etc.) I even saw a shower screen recently, I think. People are often happy to deliver if you pay for fuel, and I have had people deliver for nothing (although distances are smaller in the UK).

    If there is broadband in your area I wonder whether it would actually cost (much) more than dial-up? Have you checked out the prices?
     
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  10. Indigophoton

    Indigophoton

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    Hi Tania

    I wonder, are you able to make grocery orders over the phone? Because if you can, that might open up a few options.

    Organic home delivery box schemes will often take phone orders. They also sell all kinds of things these days, not just meat and veg, and don't usually require an ongoing commitment. There seem to be a few in South Aus.

    Alternatively, non-organically - I think I got the impression at some point that you are in Adelaide: if so, then, for example, this big general grocery store takes phone orders for home delivery, and I'm sure there are others.

    Good luck!
     
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  11. taniaaust1

    taniaaust1

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    There wasnt a cheap broadband in my old area (country) at all hence why I still had dial up (It was heaps more expensive otherwise) Now that Im not in the country anymore.. I should be able to get a good deal.. Ive been looking into that for the past coule of weeks (thou my elderly friend said my computer wont cope with going faster). I just got something in the mail two days ago saying my home is now on the NBN network and my area is one of the first in this state to get the new fibre-optic cable for superfast internet.

    I havent had much luck with people wanting to drop off freecycle stuff to my place (ive tried a couple of times to do that in the past year..even with offering to pay, they dont want the hassels. Im on the outskirts one could say of Adelaide so way out the way for most people (seaford rise which is out past Noalunga, if one knows Adelaide)... I think that may of put a couple of people off of offering me things in future when I asked that as they had been wanting easy pickups). I have got a lot of stuff there before. (I got 2 washing machines like that.. I think I used it to get about 4 things last year but tried to get many more things then that.. there is a lot I was needing).

    So Ive stopped doing that lately as its just too hard for me to find people to pick things up and I was ending up letting down people who did the offer (kept having to change pick up times due to having to find others to do it and any times couldnt find someone to pick up at all etc people then were ending up getting annoyed at me which then was causing me a lot of stress). So Ive cut back on my freecycle use, just too stressful with these problems. (I never have any luck with getting things in my own suburb and my support workers cant take me anywhere else).

    I tried to get a wheelbarrow, shed, plates and other stuff on freecycle last year without luck (so ended up having to buy those things). Last year thou I did thou get the washing machine, tank (which still isnt connected to the house yet.. I hired two people to pick that up!) and $60 worth of paint (hardware person saw my request on freecycle, they'd made up the wrong colour for a customer, so I got the paint) to get things in my house fixed (actually the badly peeling laminated bookshelf I was going to get fixed that everyone has been telling me to throw away..still isnt painted.. .Im trying to get things fixed as is just too hard to have to hire a trailer and pay for delivery for somone to deliver me another one). Everything takes ages here as Im having to rely on others.

    Phone order groceries.. that is something I had never thought of and havent tried. I going to check that one out. thanks heaps :) That sounds like that could work.

    Ive got lucky as my family have decided to get together for Australia day (which is on the 26th Jan..tomorrow).. my sister wasnt going to take me (she keeps thinking Im too sick so I dont even end up getting told or invited to many family things.. she doesnt want any hassels I guess..she's told me that she wont be bringing me home if I get sick and she's staying all day.. so if I go downhill.. I'll just have to call an ambulance). Ive told her that I very much still do want to go.. I hate how my family tries to leave me out of things. (its supposed to be 30C.. that is my cut off limit for being outdoors (still very uncomfortable for me thou) but it will be at the beach..so it should be a bit cooler. I'll be able to lay in the sea to keep cool so I can go to that thou it is going to completely exhaust me being out all day (I'll probably be sleeping in the sea in the shallows). So I'll be able to get her to take me to a bank to draw money out for my support workers to do my shopping next week on the way.

    (I'll still going to check out the phone thing as I will otherwise run into this whole issue about shopping again).

    "maybe they have a handheld credit card device that they can bring?"

    I'll find that out. good thinking.

    thanks all for the ideas :) Im so glad there is this website.. (my case worker should be giving ideas like this.. sad that I have to come here and find out how to trouble shoot).
     
    Last edited: Jan 25, 2014
  12. taniaaust1

    taniaaust1

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    my newest skin issue.JPG This is my lastest issue to occur.. a new skin problem.. Ive had this for 3-4 weeks now and it isnt looking like its going to go away.. Im wondering what it is? Could it be cirrisis (spelling?) my aunt gets that badly and my 23andME test showed me as having the gene and having a 15% chance of developing it. Anyway..anyone got any ideas. (all that area including where its redder around it is itchy). The skin in that area has gone hard.

    (and I've finally worked out how to upload a file here again)

    For anyone wondering, its an 1inch wide patch to the side (more to the front of my leg of my ankle) about 1 inch way from the strange bruising i used to get on the top of my foot and over the front of my leg across from my ankle which got darker whenever I showered, I had photos of that in the past here somewhere). The strange bruising rash thing I had for 18mths is now gone but I think its interesting that this latest thing is only 1 inch from where that used to be..
     
    Last edited: Jan 25, 2014
  13. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    The phone ordering of groceries sounds like a good idea to me. It would free up you support time for other tasks.

    Could you keep some cash hidden in your house for emergencies when you needed to send someone else to shop or pay for a delivery (if they won't take a check or credit card)?
     
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  14. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Please be careful! Make sure the tide isn't coming in and there is no risk of being washed in by a large wave, or rolling towards the deeper bits!
     
  15. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    It looks very similar to the flaking I get in the same area and also on my knees. I think other people with ME get this and there are threads that mention it. I've had mine for years and don't pay much attention to it. I would not think it was psoriasis myself.
     
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  16. taniaaust1

    taniaaust1

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    I wake up if my head goes under water so wont drown. Thou I must say it isnt a pleasant way to keep waking up.

    I used to always have to sleep in a bath of water at various times of this illness eg feeling dreadfully hot or at times when I used to run the high night fevers so used to sleep in cool bath.. and also when I used to get Morgellon's with it, I used to sleep in bath of salt water to gaina bit of relief from the biting feelings happening all over me...it was unbearable otherwise.

    Your post brought me a funny image to mind.. someone asleep and floating out to sea and waking up to find onself in the middle of the ocean. But that just wouldnt happen unless one was on a floating thing as the most boyant person would get their head under water and wake up.
    ...

    I cant remember what time Im supposed to be picked up. Hopeing my sister hasnt forgotten me.
     
    aimossy likes this.
  17. taniaaust1

    taniaaust1

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    Sth Australia
    Does yours itch? so rather annoying when its itchy.
     
    Last edited: Jan 25, 2014
  18. taniaaust1

    taniaaust1

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    Sth Australia
    I dont tend to have savings to keep stored.. Im living fortnight to fortnight on my money. There's always more I need to buy which I dont cause I run out.

    A burglar looking for cash here would be very disappointed.
     
  19. taniaaust1

    taniaaust1

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    Sth Australia
    my sister hasnt forgot me and is on her way here now. :) I hope I can have a good day with nothing going majorly bad ***fingers crossed***

    My sister already freaking out a bit..worrying what to do with me, how to get me close to the beach event my whole family is going too.. worrying about parking.. worrying about having to drop me off alone close as possible while she finds a car park. (cant take the wheelchair as I assume it wouldnt go well on the beach sand and my sister doesnt want hassels).
     
    aimossy, MeSci and madietodd like this.
  20. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Cornwall, UK
    I think it sometimes itches a bit, but not too bad. I do get a lot of itching generally, which I think is common in ME, but not all people experience it exactly the same.
     
    aimossy likes this.

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