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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. taniaaust1

    taniaaust1 Senior Member

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    Update

    Following doctors orders it was time today to put my Folinic (active folate) up more (which is slowly being increased). So now taking twice per day

    I "may" be doing a little better since I started all these new things a week or so ago. The other day I missed one of my rest days I usually need every 3rd day and wasnt affected from missing this (which is unusual as I usually always then start crashing when I dont rest up all the third day).

    Maybe just a coinicidence thou.. still too early to tell.
    I have the 677 one which is apparently according to Mitchell worst kind of MTHFR. Im also homozygous for it (so have two copies of it not just the one).
  2. taniaaust1

    taniaaust1 Senior Member

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    Want to order supplements from iherb

    Thought I'd share this as it could be useful to someone to save a few dollars.. if anyone wants to order anything from iherb for the first time, you can use the Coupon code from my order to get $10 off your first purchase if your order is $40 or up.. or $5 off your order if its under $40. My coupon code to put in is QET895 . (it gives me a credit bonus too but that's not why i posted this here).
  3. LucyS

    LucyS

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    Thanks Tania, I'm disappointed to hear Dr Mitchell has a harsh manner!! Is he supportive though of CFS in general, I was told he was a CFS specialist? So I would assume he was, but maybe he just isn't an overly compassionate doctor/person?? There are so many like that aren't there? it's a shame, that's where Dr Graham was so special, so understanding and compassionate, rare I've found!!
    Thanks for the info re Dr Gale, I'll look into that! Hope you start to feel some benefit from your new protocol,
    Lucy
  4. taniaaust1

    taniaaust1 Senior Member

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    Dr Mitchell one could say is caring too (he's just not gentle mannered like Dr Graham is.. you'll see that if you say anything which bothers him).. He seems to seriously wants his patients to get better and even when my appointment took far longer then it was supposed too, he didnt rush my appointment last time. His manner is kind of hard to explain.. just dont use the word "but" at all in your sentences to him as he sooo hates that and you'll then soon find out what I mean about his manner as he'll come down on you like a ton of bricks.. He also dislikes it if one mentions anyone else who have ME/CFS.

    As far as what he thinks about ME/CFS goes.. I still dont really know after spending 2 and a half hours with him at least (he thou hasnt said any psych views to me at all). Im getting the opinion thou that he may believe that those with ME/CFS have many different things going wrong in their bodies which make up the illness you have in your body and hence he'll work out trying to work out what your illness puzzle is. He doesnt like me at all giving my illness a name or calling it ME (so that makes me wonder if he doubts the existance of ME??). His brother I think it is has ME/CFS (and his brother is part of the SA ME/CFS society.. it could of been the secretary or president or something so he must be quite ME/CFS aware).
  5. LucyS

    LucyS

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    Haha, lol at the "but" warning!!
    Do you mean he doesn't like you challenging what he says and his ideas, theories etc with a "but......" reply??
    Eeeeek, I'm all about the buts!!!!
  6. taniaaust1

    taniaaust1 Senior Member

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    no.. he just hates the word "but" in any form.. no matter how its used (Ive never said anything to challenge). eg On trying to answer his question on what i ate that morning... he blew up at me for saying.. I had eggs for breakfast "but" i cant eat toast with it. Maybe practice not using buts at all in your language before going to see him.

    lol I guess his mummy used to tell him off about that word.. he's really got an issue.

    I wouldnt dare try to challenge anything he said. He's very different.
  7. LucyS

    LucyS

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    Oh my goodness, really!! That's terrible! I'm sorry you had to go through that, but thank you for the heads up, I'll prepare for the visit!! Why is it never straight forward!! Does the perfect doctor even exist?? lol
    Just out of interest, what sort of age is he?
    Tx
  8. taniaaust1

    taniaaust1 Senior Member

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    I'd think his age would be around the late 50s (maybe older).
  9. taniaaust1

    taniaaust1 Senior Member

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    Update

    The protest I was doing went well http://forums.phoenixrising.me/inde...n-health-and-research-medical-congress.20702/
    .......

    Housing Trust (gov housing agency) is still causing me stress. They've now sent me review form with a time limit to get it done, without sending also my old one so at least I could use the past info to help me fill in another (even thou I'd been told I wouldnt be being bothered by this stuff while my boyfriend is overseas).

    Yesterday their social worker rings me.. fortunately she got me at a good time at one of my more able brain times but as what usually happens to me when trying to listen to someone on the phone, I had to several times ask her to talk slower (why do people then start talking like robots?) and quite a few times had to ask her to repeat. If I wasnt having a good brain time I wouldnt have made it throu that call (I layed down while on the phone so I could think better). But anyway made it throu that phone call okay and found out that all the doctors they have on my notes arent ones I see any more.

    I was then asked for my doctors names and of cause I couldnt remember many of them (just my CFS specialists).
    Her: So you have forgotten what GP you see now?
    ME: Yes Her: Where is he based, what clinic?
    ME: I dont know Her: What town?
    ME: Mt Barker .. (only then I remembered the clinic isnt in Mt Barker a little later so I'd told her the wrong thing with this answer)
    Her: What branch of the DisabilitySA are you under?
    ME: I dont know, cant remember (I think she asked me that question several times)

    I also forgot about some of my other specialists too I think and probably ended up saying wrong words for things as I often do so could of ended up giving her info which isnt right so probably well end up confusing them or they will think I've lied about something when info I gave dont fit. All this is exactly WHY I need my boyfriend with me when dealing with people even social workers....... He's like my brain when it comes to remembering things and giving out correct info. The social worker thou was very nice... and said they can apply for some funding to help me to move house, I assume she means to pay for a moving truck (the big, well HUGE issue for me thou is the HOWS of being able to move house.. how does one move house and pack when one cant do much physical stuff at all)

    Today.. I had a collapse. This time in the local computer shop. I'd told my support worker I was fine to go in alone as I was feeling very good (as after all it was only 10 metres away from the park and I only had to buy an ink cartledge and it wasnt hot today). Turned out thou there was two other people at the pay counter before me so I ended up standing. After only a few minutes I suddenly lost my balance and ended up on the floor and couldnt restand again by using things in the shop to help pull myself bac up but as I was wobbling everywhere on my feet and highly unstable.. I had to go back onto the floor. Just as unsettling, I'd also nearly lost my ability to speak and my language was all coming out wrong as I struggled to put words together in the right way. I ended up thou after a minute, being understood enough for the other customers to go out hunting for my support worker outside in her car and tell her I needed her.

    We did the normal.. I had to send her back to car to bring me my drink and I just keep sitting on the floor of the shop till I was recovered enough for her to help me stand and hold onto me as we left the shop and got back to the car. Due to all the dramas today (I some how managed to jam up the libraries computer system when trying to borrow things as I was putting things on their scanner fast so I wouldnt be standing long and it froze and it took them half an hour to fix it.. they said in future to bring my things to the desk for them to do).. So once again I didnt get my shopping done, all the dramas take up time and then my home support time has run out. This is the second time in a row I hadnt been able to get my shopping.. I had to end up just getting my support worker to quickly run in the shop and grab me milk and the soda water I drink.. and I had a large shopping list which just couldnt get done as I'd already gone over time with the support hours. I really really wish I'd had time to get mself some sugarless chocolate which Im craving with todays stressful day.

    This sucks as obviously the med increase of POTS drugs and the BP drug hasnt helped me at all any further. I also hate it when I get no warning that this is going to happen to me and suddenly go from feeling fine to collapsed on ground.

    I did notice I was having a hot flush after I went down on the floor and at that point noticed I had broken out in sweat (thou it wasnt cause outside temp was hot.. more like heat from within). The hot flush thing I get happening from standing is usually caused for me by an orthostatic hypertensive spike (Im yet to notice my POTS causing severe hot flush).

    Anyway.. Ive left wondering exactly what happened this time (my new top of the range BP monitor which so far had managed to take my readings even when my heart has gone irregular, couldnt take my reading when I got home after the collapse and was standing .. my BP came out saying 0/32 (so obviously an error but weirdly it didnt say error.. but it was clear I was very tachycardia as my heart was beating double it usually does.. probably was arrthymatic too but with all the symptoms I was getting from the standing eg nausea and the head symptoms..I wasnt paying much attention and my heart beat was going too fast to notice any arrthymia). I only managed to get a normal BP reading after I'd layed down for a short time.
  10. taniaaust1

    taniaaust1 Senior Member

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    Stress++++

    The Gov Housing Trust Dept thou they told my boyfriend they'd put ,my housing stuff on hold when he was away overseas.. they've just offered me another house and told me I need to go to their office on one side of Adelaide and pick up the keys and have a look at it. The house is in a PERFECT LOCATION for me (right where my sisters kids go to school and the suburb next to her house). Im very upset as I dont know how on earth Im going to get there to look at it .. to have such a perfect sounding house offered to me but not being able to follow it up due to lack of being able to get places (Im trying very hard not to cry).

    Apparently they only make two offers too and if I dont take one of the two up.. I go right back to the end of the 3 year waiting list for an emergeny housing transfer. Neither my home support worker nor my elderly mothers friend who occassionally helps me.. can help get me there (as neither drive in the city). My sister last time she drove all the way to my place was in tears the next day due to her CFS/FM, it made her quite ill.

    Ive rang the gov housing trust agency social worker and left a message on her answering machine asking her to ring me back ASAP. (I only got the letter today-Friday and only have till Monday to sort this out!!!!! Kind of hard when Im completely reliant on others for transport and have my boyfriend overseas right now.

    Maybe I'll try ringing Family and Community Services to see if they can help me pay a few hundred dollars for a taxi to get me there. (Ive already over used my given home support hours and already are over this week).

    ..........

    I guess I also have the option of slash my wrists.. call an ambulance (then I'll get to the city).. then after they discharge me the next day.. which they give me a taxi voucher to get home.. I then could instead use it to get to the location I need to go to to pick up the keys and check out the house Ive been offered by the gov dept.. Im feeling so upset and desperate over the situation right now. DisabilitySA told me I should move house but I dont have a way to do it.
  11. taniaaust1

    taniaaust1 Senior Member

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    Update

    After a weekend of so much stress over the house thing (and making so many phone calls to whoever I could think of).. the issue has FINALLY been sorted out. I even rang a MP about my situation earlier today. This afternoon the social worker from the other housing agency branch contacted me back. (I'd tried ringing mine again and been told again to try phoning the other one again which I'd done also on Friday and they said they'd also let the other one know I rang AGAIN and must of rang them theirselves as 5mins later the other one rang me back).. why does dealing with gov departments always be this hard!!

    She then today said she'd ring DisabilitySA to try to sort something out (I'd already rang DisabilitySA on Friday). So the two gov depts FINALLY ended up working together so I could do what the gov dept wants.

    What is most amazing is the guy who is now going to take me (DisabilitySA person).. who was great and no bullshit on the phone. He actually LISTENED (I'd long stopped thinking that Gov departments are capable of doing that :alien: ). He wanted to take me there on Thursday but when I told him I needed that to be a complete rest day as I have medical things on both Wednesday (blood tests) and Friday (Doctors).. He offered to take me instead the Monday after. (Ive no idea what housing trust people thought of that as my boyfriend gets back on his trip the day after that I think it is.. and the housing dept had told me they would not wait for him to get back to take me.. anyway.. the DisabilitySA guy can now argue out with the other Gov Agencies if they have still any issues with it. So if they want to be still unreasonable, they can now be unreasonable with the other agency.

    I also told the DisabilitySA guy (seeing he seemed to actually be understanding things) that I do not think the other agency have even paid any attention to what my housing needs are.. so I wouldnt be surprised if we found out the house is going to be no good for me. It could end up having a big flight of steps or something.

    ........................

    My list of things to ask doctor about while there Friday. (this time just the ordinary GP as she's closer)
    - Going for the mistake made on a referal which needs to be corrected

    - Also need to get the letter for my insurance company so they will finally pay for my compression stockings (after they rejected two others as drs didnt put in enough info for them). I dont know if she'll do that as she's not the dr who deals with my POTS

    - People here think I should ask doctor about that aweful meat rotting smell i had in my nose the other day when something in it shifted.. so will ask about that IF I get time. (I usually dont bother about minor things).

    - I also have fungus or something starting up on the bottom of my foot again today.. in the middle of my foot at the towards the side of it. Its an area Ive had issues with before but never have asked a doctor about as there is always too much more important things to go throu. This time its not just very annoying itchy.. but my support stockings are irritating it even more (in the past when I had it, I wasnt having to wear support stockings). It usually when i get this (always in exactly the same place on my foot bottom.. not to be confused with the strange discolouration Ive had on the top of my other foot which no one knows what it is). The thing just happening again ends up very red raw as its so itchy I cant help scratching it and with this I end up scratching the skin off.. This time is looking like a drier paler weird patchy thing on my foot (looks like fungal)

    (she doesnt deal with my POTS stuff so I cant go throu my collapse last week in the store and how my POTS drugs arent doing enough. She only took me on cause I agreed to be seeing specialists for the issues she isnt familiar with. So I need to see my other specialist about that. Havent got to go back to that specialist due to lack of transport to get me there so need to wait till boyfriend gets back).

    He's having a very hard time away so Im not looking forward to having to lumber all my medical stuff on him as soon as he gets back form the trip ...His mother who is 97years old and using a frame and falls, who he is acting for carer for both her and her partner.. has got sick while on the cruise away. She saw the ships doctor who has told her the reason she was sick is "her body is preparing". ... and this stupid doctor didnt say anything more so she now thinks the doctor has told her she's dying (is that would he actually did mean?) and she's completely freaked out over it.
  12. taniaaust1

    taniaaust1 Senior Member

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    Im soo stressed out right now I feel like Im going to vomit. I just got a phone call from DisabilitySA (Margaret Pope) who believed I was taking the house.. so I had to explain to her that I dont know if its even going to suit my medical needs till I go there due to HousingSA possibly not even bothering to check it does by going by my past review form of what my needs are (no one at housingSA has even mentioned what my needs are with my housing so I dont think they have even gone by the form) and just saying "you'll have to go and look".

    What thou has me so stressed that I feel like Im close to vomiting is I told DisabilitySA that when I move.. my current agency (who they fund for my homesupport) doesnt work in that area Im moving too and hence I will need to go throu a different homesupport carers org (which they will need to be funding instead of the other one). I wanted reassurance that when I move that my support needs will be quickly shifted over to another home support agency (I'll need it right away!!!.. I wont be able to manage much at all even of the unpacking.. I forgot to say that to her :( .. Im having an extremely hard time getting my situation throu to gov agency workers). She just goes "we'll look at your situation after you move and put you onto another agency IF you need it. Im sooo freaked by the way that sounded "IF" IF i need it (they also said at that time if that is needed that they "may" then also give me a caseworker (thou Im a client.. they've always refused to give me a caseworker so this means I just deal with whatever duty person is on for the day when I get in trouble.... So hence the one who rang me even said not to ask for her if I need to call.. told me to deal with the duty person. So this means I need to deal with people who dont know of my situation when I cant even often express well the degree of my issue on the phone as I have trouble some verbally.. esp with phones).

    Im terrified that when I move Im going to loose ALL my support hours. This comment has very much distressed me and thrown me into so much fear. I cant survive well at all without the home support and will be back into the situation I was in the past (to where I ended up going to jail JUST SO MY NEEDS WILL BE MET somewhere (if the health services reject me.. what else are I to do). II may have to end up doing a crime or something if I loose my home support as I wont have them enough help for basic needs stuff). Im right now so so scared about what situation I may be about to be put into due to needing to move. IIts almost unbearable

    Yes I will be moving close to a sister but she works 6 days a week and has two children and a husband.. its not like she will be able to step in and fill in my care needs. Im just really have her more assessable for emotional support and someone I can visit at times. Im moving close to her to hopefully reconnect better to family .. not push them away due to my situation and needs.

    I seriously dont know what is going to happen to me :( and Im going to be immensely stressed now till I know.

    Oh and I also are completely confused now how has been dealing with me and who that guy is or what agency he is from.. who is taking me to look at the house on Monday. I thought (actually was sure in my head) he was DisablitySA person.. but the DisabilitySA person who rang today (from Victor Branch)..told me he couldnt of been from there soand is telling me he must be a housing trust social worker). That makes no sense at all as I got told it was Victor harbour branch (of whatever agency he is from) and Victor Harbour Housing Trust dont even deal with the area I live in now nor the area the house I may be moving too is in.

    Anyway.. I now no longer even know who is dealing with me and trying to help me..as Im so confused. This whole thing is too much on my brain and I cant keep it together to sort out who is who..and what agency is what. The person who rang me today told me she's come and seen me twice before but I cant even remember.. I probably go throu ALL my notes on this thread at some point and see if her name comes up.. but its a lot of reading and I hate going throu all the bad things Ive been throu looking to try to work it out..if her name is there.. (and I cant even remember what I wrote in or on when the guy the other day rang. he gave me his name and phone number and I cant find what I wrote it on and have no idea what Im looking for).
  13. taniaaust1

    taniaaust1 Senior Member

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    This morning Im functioning on only 3 hours of sleep. Due to all the stresses of the gov depts and the heat, what was starting to improve with the insomnia Ive now lost the slow gain I had over the past 7-8 mths I think it was.

    This morning I didnt get to sleep till 7.30am (cause that is how long it took for my house to cool down enough for me to be able to sleep) and then I woke up at 10.30am cause it was already starting to heat up by then and someone rang at that time and I cant get back to sleep if too warm :( (everyone who is dealing with me I tell not to ring till after 12 due to my often insomina by gov depts tend to ignore that.. so there went my sleep with that phone call. I didnt pick up thou so I dont know who rang.. I was too slow minded and zombied to do so with being woken from a 3 hrs of sleep). Due to lack of sleep.. Im now teary and starting to feel a bit depressed. If things continue how they are for too long, I could end up back in situational depression situation (which Ive had unpleasant short bouts of in the past) or even suicdial again as this kind of intense stress over time can send me back into mood swings and has an add on affect to my already mood issues of the high insulin and the PMDD. Im fighting now to try to remain cheerful.. its being hard when believe from what the gov agency said that Im probably going to be cut off from the home support I need and actually need more then I get now when my boyfriend is away.

    Yesterday due to heat I ended up in a limp lethargy dizzy and completely dazed with blurred vision state for many hours where I couldnt do a thing... when I checked wondering if I had any physical symptoms of the heat affecting me.. I found that I was in tachycardia when I was sitting with my heart beating 20-30 beats more per minute then it normally does when sitting. So not only do I feel like my body isnt coping with the heat as its giving me symptoms but I also had measurable symptoms happening from it too.. apparently ones heart rate goes up in heat stress etc.

    Yesterday my support worker saved me twice from being hit by cars. When we went to Mt Barker for my blood test and that...that town is slightly bigger then my small country town and I found out just how bad I are currently with roads. First time she had to grab me and pull me out of the path of a car... my brain hadnt registered that we'd come to the road so I tried to cross it without looking and there was an elderly driver very close. (I would of been hit if it wasnt for her.. he was too close so her grabbing me and pulling me back saved me).

    Second time it happened.. I went to cross the road.. and somehow got distracted as I was walking across it so stopped right in the middle of the lane without being aware where I was standing and hence was just stopped there trying to talk to my support worker while a car was headed at us. She didnt have to grab me that time as I saw something was wrong as she reacted shocked looking which warned me something was wrong with the situaton before she could grab me. I was still confused thou and didnt immediately work out what was twrong thou from her face I could see something was.. she actually had to point out a car was headed at me (it was learner driver.. my support worker said the learner driver had very shocked look on his face that I'd stopped dead in his lane with him coming towards me.. I myself.. even hen I finally was made aware of there was a car..didnt even realise it was a L driver, she told me that right after the incident).

    I badly lack at times the ability to focus on more then one thing at once due to my concentration issues (and the POTS worsens it when Im out doing things).. eg hence why if I get distracted while crossing road.. I just can completely loose road awareness soo easily.

    Anyway.. its very very scary..that I had two incidents like this yesterday in only 1.5 hrs requiring another to warn me or I would of been hit by cars (ive done this a bit before but not twice in one day almost getting run down) .. its just another thing which has now just added to how much I already are in fear about my move and the possibly of my home support being removed. How on earth will I function i the city esp in unfamiliar surroundings. I cant go out alone anyway due to the sudden collapses but now I know id be at very high risk even without those collapses.. I cant trust my brain to work to keep me safe. Thank God yesterday my support worker was there, I dont want to die but this illness could easily get me killed.
  14. taniaaust1

    taniaaust1 Senior Member

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    Update

    My daughter dropped in (cause they were going to shoot some little kittens from a half wild farm cat who'd been run over and when I heard that after she asked me if I wanted one.. I just cant allow these innocent creatures to be shot.. so said I'd take them all and try to somehow find homes for them). So she came to drop the kittens off **sighs..now I have 6-8week old 3 kittens to sort out on top of everything else.. two still half wild so I need to tame a little before finding good homes for them. (I havent even seen those two again since she dropped them off so dont have a clue where they are thou its 18hrs now..so Im hoping they arent locked in a cupboard somewhere.. Ive even tried to find them inside my lounge chairs.. all I know is they havent got out of the house) .

    While she was here I got her to help me measure up properly the 11 places on the legs to see just see how the out "by two whole sizes" graded medical compression replacement stockings fit (stupid medical supply shop got in the replacements in wrong size for me ..posting extra smalls instead of small+). Turns out yes there is NO WAY the stockings are coming to be okay for me. So now I have another issue to sort out again (and hopefully it wont take another 5mths or so to receive the right size).

    The GP I saw yesterday was great.. Ive been going to her for a year now (seen her about 4-5 times as Im usually at specialists).. but her compassion etc astounds me and she is so sensible over ME/CFS and dont say stupid things (thou she isnt the one tryign to treat it.. its just relieving to have a GP not being an idiot or being upsetting). She actually knows the right things to ask to get me to give good info to her (I need right questions asked). She wrote out a long letter to my insurance company about my need for the compression stockings and included all my details. She also changed the mistakes she'd made in the referal I got from her last time. I hadnt been aware that I'd forgotten to go back to her after that first time I saw her and we ran out of time, to give her a run down on all my medical conditions. I unfortunately thou hadnt bought my medical file with me and couldnt think well.. so probably still things missing from her records.

    I asked her if she'd mind taking on as a GP (general practioner eg family doctor), the other in my town who still has no GP at all (due to not being able to find a suitable one) and she said she would thou she cant help with ME/CFS. I think the other will be happy with her even though just to have a doctor who will listen, ask the right questions and wont give you bullshit (even if she cant have experiemental treatments etc throu her). I had to be going to this doctor this amount of times before I felt sure enough that she'll be okay for one who's had bad issues with doctors. There needs to be a ME/CFS friendly doctor list about the place as even just those who arent even treating ME/CFS are VERY HARD to find. (she like me had tried every single doctor in the local town and we both were then trying the doctors in the next town).

    I got to actually go out last night and have fun :D.. being able to go out to just have fun is a very rare thing for me to be able to do.. its probably been 6 years since I last got to go to carols by candlelight with someone or a towns xmas party (something I really love to do as it reminds me of when my children lived home, I'd take them ever year). My sisters boyfriend once a year does the sound system and the projection screen words/images in my towns xmas party which he comes down to the city to do that and this year my sister actually rang to ask if I'd like him to pick me up to go (as its only 5mins away from my house and last year I was upset as he went and never offered to take me thou Im homebound without help which they know).

    I then said I'd love to take my sisters young kids to the towns xmas party too and could look after them there while their dad worked there (said that thou I was quite tired out from the doctors appointment that day but I so didnt want to miss a rare opportuity to have some family closeness and rare opportunity for a fun outing). My sister thou due to how bad my health is didnt like that idea and thou she wasnt going to go due to her ME/CFS was flaring and she was in a lot of pain and feeling sick and exhausted, she ended up deciding to come too. We ended up having a great time.. laying on the grass watching the kids go on the free rides, took them to get ice creams, watched the xmas parade (I havent got to watch a parade for 6 years.. last parade I watched somewhere I collapsed at and then nearly got trambled by the crowd and people were trying to get the police to come and help me but they wouldnt as they thought i was drunk!! Due to the disasterous situation, my boyfriend said he'd never take me to a parade again).

    By the end of the night my ME was flaring and thou I rarely get muscle pain.. I was in quite a lot of leg muscle pain and needing paid killers... but interestingly ..my sister her pain and some of her tiredness had improved thou she was still feeling sick (she seems very FMy..and maybe the little walking about we did improved the FM side of things for her... I expect thou today she'd really be feeling it due to the other ME/CFS side of things). She finally too got herself to see another doctor yesterday (she's been in doctor avoidance mode this year due to her bad experiences with them ..she's currently still undiagnosed after 2 years) and got a referal back to my allergiest who she's seen before.

    Her latest issue is red spots which have a distinct edge to them and are quite large, eg they arent dots but spots (half a cm.. a bit like chicken pox spots).. in the past week she's got covered in spots.. the polk-a-dot look.. many of her abdomen (she probably had 12-15 on her front torso area) and some on her arms (one spot which has become infected where her bra rubs). She didnt seen to be itchy with the spots which were like fairly spread out in individual ones (didnt appear in patches). I was quite curious about her spots but they were unlike the 3 different kinds of rashes or spots Ive gotten and didnt look like the hives I get... I didnt notice her scratching at all so I guess they arent that itchy. The doctor she saw didnt know what they were so was happy to write out a new referal for her. (Im hoping either of us may find some clues to what is going on with the other but her and I with all our problems, seem to manifest usually quite differently). Maybe she's in an outbreak of untypical chickenpox or something?? (she did have chickenpox badly as a child). Apparently when she first broke out with them.. they appeared in two separate rows on each side of her body.

    She's still not listening to my advice (hence why she's probably still not even diagnosed yet after 2 years).. I told her to take photos of the spots as by the time she gets in to the allegist (next year).. the spots will probably be gone and there will be no hope of him saying maybe what the issue was (her memory gets as bad as mine does so by then I dont think she'll be even able to describe them). I think she may end up regreting not listening to my advice.
  15. taniaaust1

    taniaaust1 Senior Member

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    Things are going right for a change :)

    It turned out it was a guy from DisabilitySA who was taking me to go and see the house today (the lady who rang me from there the other day insisted that it wasnt one of their workers who were doing it). So he took me to pick up the keys from the housing office and we got the address of the house and went out to look. Turns out it actually does meet all my medical needs :D . No stairs, no yellow wattle trees, a nice quiet area and most importaly aircon and ceiling fans and this house shouldnt have mold as it looks quite new.. and there may even be room for me to put the caravan there which I use as a spare room and store things in.Its also in a seaside surburb so that too will help to keep me cooler and make it far easier for me to get out in summer.

    This guy from DisabilitySA was very nice, he couldnt understand why they hadnt given me a wheelchair esp since we didnt get everything which needed doing today done as by the time we'd picked up keys, looked at the house, returned keys I was hardly able to move my legs to walk anymore (like a mito issue??? or completely energy burnout in my legs.. the issue seemed different to my normal POTS one which I had too but was managing to ward off by drinking over 1L per hour.. I was walking so so slow and ended up collapsing on the ground so couldnt even after a short rest with legs up in the car (He had to drive the car close enough for me to be able to crawl to the car as I couldnt then walk the three car lengths to the car), and after a short rest, couldnt walk the 10 metres we needed to go to get some more forms done thou I was right outside the building, so I had to be taken home without getting the things which needed doing today done.

    He's applying to the whatt (sp?) trust for some funding for me to move but there is the big issue that this shuts over xmas and he doesnt know if they will be able to process my forms in time for the move (which are now still not in due to my collapse today). He's also going to look into getting me some more support hrs to help me pack for the move and look into too getting approval for the funding for me for the new support agency I'll have to go thru (but things will have to go throu his boss and Im hoping that isnt the one who gave me trouble in the past, the one who is completely unreasonable with me..

    If I cant get funding for the removalists.. I'll have to borrow money to do it (which I'll be able to get but I'll just be more in debt). The only big issue I now see is the packing and unpacking to move house (the DisabilitySA guy is going to try to get some extra support hours approved for me for it). My boyfriend just has got back from overseas so managed to meet us in town and bring me home but I've just found he's needing to leave almost immediately again (he came back to this state just cause I was having a lot of big issues but has an elderly mother he left and has to rush back interstate to be with who's needing him too right now) and will be going interstate on Thursday? Friday? and will be over there till after xmas so once again I'm back to too little support.

    Ive overdone it today pushing my body till I collapsed (oh well, I guess now the DisabilitySA people now have more of an idea of just how disabled I are due to one of them now seeing it for himself, seeing me start out well and the decline as we did things) and feeling not well now (more then just POTS unwellness.. but the ME kicking in.. Im hoping payback tomorrow isnt going to be too bad)
  16. Valentijn

    Valentijn Activity Level: 3

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    I've had this happen too, and I don't really have POTS. After walking (and standing) in the airport way too much, I eventually made it to the plane, and after takeoff tried to cross one leg over the other to help with the OI a bit ... and I simply couldn't lift my leg. The muscle that I needed to do it was completely unresponsive. I had no difficulty lifting the other leg to cross it.

    I also start staggering a bit when walking "too much", but that seems more like an OI issue since it goes away when I'm not having OI problems. Though it feels like minor muscles are just deciding to take a vacation while the major muscles do all the work, meaning I can still get around, I just look a bit drunk :p

    Or maybe it's some weird OI + mitochondrial issue.
    taniaaust1 likes this.
  17. taniaaust1

    taniaaust1 Senior Member

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    I get that too and at times actually have to pick my legs up with hands to move them... energy burnout of body parts to the point where they cant move.
  18. taniaaust1

    taniaaust1 Senior Member

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    Progress Report

    My body has had quite a test last couple of days so I was able to see exactly what progress Ive made since starting my new supplements (Ashwagandha extract for my adrenals, a higher dose of D3 for my D deficiency, methyl B12 and calicum folinate (bioactive folate form).

    Yesterday it was crazily hot.. it was 47 degree Celcius!! the thermometer was reading (that's almost 117 degree Fahrenheit).. and was the first day of my move into new house :eek: . Im usually extremely heat intollerent eg start to get ill when it gets to about 24 Celicus... but with these new supplements.. my heat intollerance is far far lessened. Thou I did end up bawling in that heat and ended up having to be picked up to stay elsewhere last night as it just was far too intollerable to me after 20 mins in that... I really felt like it was going to kill me, I couldnt handle it.

    Not only that, my body in general is doing a little better.. a little bit more stamina. Before the supplements I could last out 2hrs and 10-20 mins with activities (standing and sitting activities) per day with my home support worker. Today thou I lasted out 4 hrs (of standing and sitting activities) , so that is a HUGE improvement, that's just over 90 mins improvement im what I can do thou it was still a real push and Im not all that good now.. I think its the new methylation supplements which have caused this improvement which I think is also an improvement in my POTS.

    I now have 5 days left to move into the new house.. no idea how Im going to do this even with the 5 hrs extra home support Ive been given (which I've already used up half an hour of that). I had 4 people (family and a friend) around able to help today (before they go back to work on Monday) and all up there was 24 hrs work put into my house move on top of what was already done (with 3 people helping me pack before this) but I dont think its even quite half done yet. Panicing about it :alien: but fortunately I arent crashing any more then usual for what Im doing and Im finding I can do more (thank you supplements!!!).

    I also have decided that I certainly do find the Clonidine useful at times but only for the adrenaline rushes. I didnt take it the other day and then did have an adrenaline rush in the middle of the night which woke me up. So i then got up and took the half of pill dose i'd missed.
  19. taniaaust1

    taniaaust1 Senior Member

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    3 more days till Im supposed to be fully moved into the new house. Its still looking impossible to do. I had today 3 people trying to help me pack and clean up home Im moving away from. My health is declining day by day now.. To add to the cough Ive had now for past 2 days (like a reactiving virus thing I get when run down).. now I have developed a nose which is blocked and starting to go snotty and is both blocked and running at the same time. I wish I know what this viral? thing was which flares at times when I get too run down by doing too much.

    Yesterday I developed a sore head too.. not a headache at all thou..but like my head was sore (as if it had sores all over it). That soreness has now gone but now I have that same kind of soreness but now it is coming from the left side of my heart and what may be refered soreness in the left side of my rids.

    Tonight.. I had a short but severe crash.. not a POTS crash (which can be short) but weirdly a very short ME crash (maybe thou it was cause I only got 2 hrs sleep last night). Im still completely disorinated from it.. I woke up thinking I had slept for 36 hrs straight but then found out I was still in the same day. As soon as the last person left today.. I headed for bed (I was soo wiped and sore in my muscles with painful feet that I could hardly walk on them anymore.. ever tried to limp on both feet at once!!).

    I layed down and a short time later the exertion I'd done started to hit me big time... I could feel my body about to go into its past symptom of tremors (actually I think it did tremor my whole body a few times). That is disturbing as if I crash into that symptom again and all my past neuro symptoms again.. it can take me 2-4 years to recover from those symptoms and they were extremely severe in the past.. easily jump from minor tremor body issues to major tremors and seizure like stuff.

    Then things got scary as my body was so exhausted that not only could I hardly move due to exhaustion (something Im used to if I crash bad... hard to even lift an arm), it also actually felt like it was having trouble breathing.. my body struggling to find the energy to breath (it was completely different feeling to what Ive had with air hunger in the past) and like my body was going to actually close to stopping breathing.. I had to focus on my breathing to keep me breathing (while wondering if I was going to die from actual body exhaustion).

    Due to my experience, I wonder if as anyone has ever just died with ME due to the body exhaustion.. can one just stop breathing? Maybe they have but their deaths have been put down to heart failure or whatever???) . Then I think I had a pass out. I woke up then thinking it was the next day but only 5 hrs had passed. Im still sore in my muscles and still have the sore feeling which is seemingly coming from the left heart area (I wonder if that is something I should worry about), the severe exhaustion has passed.. my ME related cough from past 2 days continues along now with my nose issue and now Im also starting to get a sore throat (once again.. right side of throat. Two days ago I had one of my post exertional ME earaches on that side).

    With worsening symptoms now coming in and still a lot to do before move is finished, Im getting scarder that Im going to have a proper major crash before this move finishes. Scared im about to spend the next year stuck in bed instead of being able to enjoy the new house.

    Im back to bed.. sucks as Im not sleepy tired a lot but so so exhausted (but now also wired at same time as my nervous system is jazzing up). Anyway.. Im crashing worst and worst (but strangely short crashing and not like my past typical ME crashes) but crashing in scary ways.

    Tomorrow thou Im getting out of time to move on time, Im enforcing a rest day. My boyfriend didnt understand that when I said I need to rest that meant "no visiting.. no coming to my house to pack my stuff and take it away..no stress or pressure on me in anyway. He didnt understand how I cant just lay there and that be rest..but it isnt.. I need complete silence etc). People are trying to help me but my body has gone into breakdown mode so just having them here is going to now make me worst. If I dont take a day for complete rest even thou I have already signed a contract saying I'll be out of the house on Friday.. I'll be at greater risk of one of these quick severe scary crashes going into a complete unrecoverable crash.

    All I can do is hope Im going to make it throu this and come out the other side okay.. but yeah.. realy scared now I may not make it throu okay. There is no way I would of attempted this move if I didnt HAVE to move.

    If I die, I guess that will answer the question for others.. about if a ME person can die from complete severe body exhaustion. **fingers crossed** that I wont get more incidences of struggling to keep breathing due to lack of energy
  20. taniaaust1

    taniaaust1 Senior Member

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    Ive finally come throu that move thou there is so much still still to do. Family gave help to move my stuff but now all that help is gone as they are all back at work etc so now Im left with no one to help me unpack or all the boxes. Im sleeping with no sheets on my bed and my mattress on the floor (as the metal frame broke during the move and now needs welding). I went for the first two nights in the new house without any dinner as no one in my family took me to get any and I didnt have any cooking utensils etc to be found. After that I ended up using chopsticks to flip fried eggs.

    I went maybe a week without all the lights in my house as didnt know where the globes were. I still got no curtains or blinds up in the house at all after a couple of weeks (I need someone to help me with all this). The government housing people make everyone take the curtain rods and curtain rod holders down when tennets move out.. so this means I havent even got the curtain rod holders and all the previous holes in the walls have been filled up.

    Anyway.. I thought I'd start to put up some photos i took of what happened to my body during that 2 week move which ran me down.. my body goes into breakdown mode when I start to really ME crash and I develop all kinds of symptoms. All my body can be affected in some way or another with rapidly shifting symptoms. Its quite scary and some of my symptoms can be very severe and sudden.

    I had an outbreak of something in my mouth so I developed lumps over my tongue, heres photo of one of the lumps on the side of my tongue (these come up rapidly.. and can vanish just as rapidly..eg within an hr or two. These ones didnt burst. (that one on my tongue looks like one of the outbreaks I had on the roof of my mouth last year after I did too much..but on that occassion some of them bursted).

    [​IMG]

    more photos to come.. I need to find the one I took of the sores I got over my legs from moving.

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