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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

    Ive maxed my credit card out again.. this time paying for the lyme test and now are awaiting the test kit so I can have it done.

    I also today was taken down to have all the other blood tests done, it turned out that there is a place to get that done only 2- 3 mins drive from my new house. The lovely nurse kept getting confused as there was so many and at one point told me I may have to come back another day as she was worried about taking that much blood from me in one go. (I didnt think it was all that much thou.. I remember once when 17 tubes of blood were taken). She ended up thinking they were all done so we left.. only then to get a phone call telling us to go back as she'd missed one, so back we went.

    While at that surgery, seeing its so so close to my new home. I made an enquiry about the doctors there (trying to find out what their special interests were).. Unfortunately thou that doctors clinic is not taking on any new patients at all.

    One thing which was great with having to go to do the blood tests today was sitting at the end of my road was a wardobe just sitting there. So we stopped and I knocked on the door of the nearest house to ask if it was theirs and if it was there cause they didnt want it? and they said no they didnt want it, and were giving it away so I scored myself a new wardrobe :D , they even delivered it to me and put it in my bedroom. (I had boxes my height piled up in my room across one bedroom wall full of my clothes as I didnt have the second wardrobe I needed for my bedroom as my other one is currently still sitting in the middle of my kitchen floor as it wouldnt fit around the corner of the new place so it wouldnt go in my bedroom. I still got to get rid of that so I can set up the kitchen table in the kitchen. Cant wait till my house is sorted out to something reasonable!)

    I also got a very nice second hand fridge/freezer today which I brought from the ones who had that wardrobe. :) (the guy had his girlfriend moving in with him so they were doubled up on all their stuff to get rid of). One thing which is so great is its one of those "frost free" ones so less work. My own fridge/freezer had badly leaked so I'd been on the look out for one. (I was having to wipe my fridge out with towels all the time or it was getting water all over the floor) and was also chewing up power due to its issues. It was great to be able to sort out a couple of my issues and at the same time.. meet someone who lives on my street. (Unfortuantely Ive had to borrow money to get the secondhand fridge/freezer).

    While we waited for the neighbour to bring around the fridge and the wardrobe.. my boyfriend got time to do my dishes :) (that got done instead of some of my shopping) .. it feels so so great to have no dirty dishes in my kithen!! Its only the second time since I moved in 4? weeks ago that Ive had some one do my dishes for me and they havent been dirty all over the sink and cupboard (dishes only getting done about once every 2 weeks). Its amazing how good it feels just to have a hygenic kitchen again.. I soo appreciate that). I spent much of yesterday crying over the mess this house is in and the lack of needed support.. so today thou I had a bad time with my medical issues last night (having to get up at various times during the night to take medications/puffer due to issues flaring up eg asthma, pain etc), Im now feeling emotionally better (thou still disappointing the gov agency has put me throu all this, I think its going to take a while to come to terms with what Ive been put throu).

    LOL i liked your yesterdays post.

    Im not too concerned if housing trust issues were slower to be sorted out, now that Im in the new house. Im like on slow mode, snail time all the time anyway :)
    Valentijn and heapsreal like this.
  2. taniaaust1

    taniaaust1 Senior Member

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    Update

    My lyme test kit from Australian Biologics Testing Services arrived yesterday. The breakdown for the cost for this was $350 for DNA - Borrelia species (2 samples.. urine and blood) and $75 for the courier from SA to NSW so came to $425 in total.. ,my kit includes all the things I need to get it off (packing bag etc).

    The instructions in the kit are very clear and they even include all the questions the courier will ask and the specific answers of each question.
    ..............

    My phone just rang and rang this morning waking me up (I'd left phone in other room so not to disturb me while in bed but it still did).. Red Cross again (I was returning their calls last week but hit thier answering machine). Turns out they'd only "half registered" me for their transport service (Had I known that and that they'd be ringing me back.. I would of told them not to ring me till after a certain time each day).
    That is sorted out now and the head guy there said when I asked again, (their person who took me to the medical appointment last week had had a word to him about how sick I am), .said that they may be able to give me a transport discount when my boyfriend goes overseas again.

    I found out yesterday that my boyfriend will be going overseas (this time to India) in May.. so once again I'll be left without the extra needed help then so thank God my home help support situation will be sorted out by then. They are coming to interview me again today. Sounds like he's going to be gone for months (didnt ask him till when). He'd been trying to delay having to go overseas again till I was sorted out with home support again.

    augh..third time lucky. I also got a phone call from the blood collection place today.. telling me that I got to go back yet again. Turns out one of my blood tests didnt reach the lab fast enough so needs redoing. (apparently it has to be frozen in 15mins). So I now have to be taken to a blood place which has the lab on site. I'll do that on Monday and get the lyme test done at the same time.
    madietodd and merylg like this.
  3. taniaaust1

    taniaaust1 Senior Member

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    Lyme Test Update

    Im not able to get my blood taken for the lyme test on Monday like I wanted too. Friday when I started getting everything ready for my the test to be done on the Monday.. I read something in the instructions I hadnt seen earlier. It says not to do the test if one has taken any herbal anitmicrobials and that one needs to wait at least a month after taking those, before testing.

    I was only on one herbal med.. an adrenal adaptagen (Ashwagandha) and hence thought it would be fine but just my luck when I went and looked it up.. I found out its a antimicrobial. :eek: So now I have a month before i can do the test.
    ............

    interesting to find that out thou as I'd thought the improvement I'd had when I started the last lot of new supplements which Dr Michell put me on.. I thought what must of been helping must be the methyl B12 and active folate but now Im wondering if it could of even been the Ashwagandha due to that.
  4. taniaaust1

    taniaaust1 Senior Member

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    Health Update

    Im not doing well at all and at this point are very concerned that my base line has changed due to the house move and the lack of support I needed from the slow agency changeover that DisabilitySA and a home support agency did.

    Im getting my normal home support again now of 5 hrs per week but due to my base line now being lower, it is no where near enough. 2 ouf of the last 3 home support visits, Ive ended up collapsed not able to walk at all (that's twice in the past two weeks). The support worker as I had a long shopping list, tried to take me to a smaller store but I still ended on their floor and wasted 15-20mins of my support time on the floor of the supermarket in an asle not able to get up at all. :(

    Its truely a nightmare situation... the store personal were very concerned (my support worker wouldnt leave me to get me another drink so the store workers were running around, trying to meet my needs..they ended up having to bring me 2 bottles of cold drink which I drank before I was able to restand..the instant coldness inside of me helps as I guess it constricts my blood vessels) and a St John (ambulance) person showed up to assist me asking if I wanted to go to hospital. **sighs** so that is twice in 2 weeks medical people have suggested or tried to get me onto an ambulance.

    At this point I really think I now need a wheelchair. Im also taking longer to recover and hence why I havent been at this site much as Im having to spend much more time in bed. It sucks.. I dont have enough support to be able to sort out my medical needs and get to doctors (Im going to have to cancel a specialist appointment yet again early next week (2nd or 3rd time in a row Ive had to cancel out with that specialist) as I havent done all the tests I was meant to do (it was more blood tests.. Ive been to blood lab 3 times in past 2 weeks for my doctors but didnt get those ones done) before going to it due to things being so bad with me) and Im just going downhill. If something dont change Im going to end up completely bedbound long term again. Im quite distressed about .

    The current change of baseline due to house move with not enough support... may take me up to 2-3 years to recover back to my previous base line :(

    Also developed a fungal? thing on bottom of my foot which is itchy and bothering me too (Ive made my foot bleed the other day as I was scratching it so much).. to go along with everything else.

    I emailed the support agency last week saying I are not managing with the 2.5 hr time the worker is here (collapsing at around the 2hr point) and need this to be shorter with possibly a second person here too so all my suport hours can be used... but they havent bothered responding back. (I had no energy left to then phone DisabilitySA as well).

    Yesterday I almost had a seizure due to not getting enough rest. My boyfriend showed up and I was feeling too weak to even hold a glass to give myself a drink.. so he tried to give me a drink throu a straw (thou I was telling him I was too exhausted to be doing that but he was concerned as I hadnt drank) but when the water hit my mouth I went into shakes.. due to the effort of trying to swallow to the point I couldnt keep the water/straw in my mouth and it went over my pillow. (I was too weak then to tell my boyfriend I hadnt got anything to drink at all and it took a couple of hours of me sleeping till I was up to telling him I hadnt choked like he thought I had done, but rather was about to have a seizure.

    He got into bed with me and grabbed my arm and put it over him (holding it there) till I went to sleep. Him holding it there was givng me pain but I was feeling soo exhausted I didnt say a thing and felt too weak to my move my arm.. so ignored the pain he was accidently causing me till i went to sleep. :( I hate being that exhausted that I'd rather put up with pain then go the effort to move a body part of mine. He later on (hours later when I could move and speak) said to me that thou he thought it may of been uncomfortable for me, he thought if it was hurting me or causing me discomfort that I would of moved my arm... **sighs** he's no idea the degree of exaustion I can reach.

    Yesterday morning I was so exhausted (from going shopping with the home support worker day before) that I got to the point where I felt I was going to die again.. I felt like breathing was being a struggle on my body due to the effort of doing it (not air hunger but my body struggling to keep breathing). I wouldnt be suprised if one day I die from and episode of severe exhaustion.. my body just give out and stop breathing.

    My boyfriend isnt being as concerned as he should be as he's not realising there is a big difference between my POTS crashes and a ME crash and as he sees me crash often severely with the POTS, he thinks I'll just pick back up in the next 24 hrs.. its thou getting harder and harder to pick up from these and my baseline IS lower now so Im able to do FAR LESS.. Im in big trouble and he's not realising it and thinks I'll be back to my old baseline before he gotes overseas on holiday.

    His comment "I've seen you bounce back before, you will do it again" and "You'll probably be back to how you usually are before I go away" (he's going away in April? for 3-4mths). Last time he was here I spent 2hrs crying over it all.. Im scared as my baseline is lower and I cant right now meet my needs even with the 5 hrs home support I get and there is a good chance its going to take me quite a long time to recover from this latest ME crash. (He's never seen me really crash with the ME in the 3+ years we've been together so truely has no idea of it.. he only has experience of my POTS)
  5. taniaaust1

    taniaaust1 Senior Member

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    Upset as my home support worker ignores my wants

    Im upset right now, one could say I just have thrown my support worker out of my house.. I told her to get out!! . I'd told the home support agency I wouldnt be able to handle a bossy support worker but they gave me one of those. (She is very nice but is dominateering in nature).

    My support worker has even gone as far as pushing me into shopping at a local supermarket I didnt want to shop at when the one I like to shop at is actually closer (so I then couldnt buy the things I usually buy and like). Today I forgot something important and I had 20 mins more time I could of used as the agency hadnt passed on to her the message that I need to cut back my support hours to 2 hrs max per session (as I collapse around that point which my support worker does know as she's been having to deal with this)... she refused to go back to the supermarket and get one important item I'd forgot and need tonight even thou supermarket is only 5mins away. So I asked her to leave them as we were just over the 2hrs max I wanted her to be here at a time. She then tried to refuse to leave... I ended up getting very upset at her and probably actually yelled at her in the end .. telling her to "Get out!!".

    The earlier shopping trip.. wasnt a good one. Its very hot here today and as soon as I got out the car.. she stood there wanting to talk to me in the hot sun (instead of just going inside the cool complex which I needed to do.. I told her 3 times I needed to go right inside). Then i was staggering and could hardly walk as she'd done that and I'd got too hot so then couldnt do my own shopping at all. So ended up having to have legs up on bench.. while I was BUSTING to go to the loo but wasnt good enough to be able to walk to a toilet while she was doing my shopping. By the time she'd grabbed my stuff thou I'd cooled down by then on the bench and the POTS was being better, I was about to pee myself (and it was too far to go to the loo in the state my bladder was in). So I ended up having to squat in the carpark just outside the door to which I was near.

    Anyway.. we got back to my place and I realise something very important that I urgently needed had been missed and she refused to go the 5mins down the road to get it thou she had more time (seeing they hadnt told her .. So when she refused to leave cause her time wasnt up (according to her.. but it was due to her not getting the message from agency).. I ended up kicking her out :( (and rang agency upset.. they are going to talk to her but Im now wondering if I should of just said that I do not want her again?? Maybe she will hold a bad vibe towards me now???).
  6. taniaaust1

    taniaaust1 Senior Member

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    This idea backfired

    Its my birthday so I came up with the idea to hold a combined housewarming for the new house (been here a few mths now) and birthday party, something Ive really not well enough to be doing at all BUT I thought that by doing this that I could then enlist all my family to do the things around my house (I have lots of my stuff which needs painting) which I havent been able to do yet and know that many hands should make light work!!.

    So thought thou I'd be really pushing myself hard to do this as in doing lunch for everyone as I cant expect them to be bringing all the food AND helping me too (but which I've tried to simplify as much as possible).. that it would be worth it. I put on the party invites to bring paint brushes and old clothes. This is the only thing I could come up with to get the more help I need (once I was moved into the house, surprised I got some help with that .... but then all my stuff got left with no help unpacking etc or other things which really needed doing, so the new house has just been a shambles and is a mess. *One sister and her husband thou have brought me a shed too make up in forcing me to GIVE AWAY my caravan I could of sold (that was the only sister who helped me with the original move).

    Anyway.. my family has been ringing saying that they want to come but dont want to have to do any work as they just want to rest up as its weekend :( . So it looks like Ive gone to all this work with my boyfriends help for nothing as my family arent going to give me help to sort my house out at all.. just will be eatting all the food my boyfriend and I made for my combined housewarming/birthday party (I spent all day in bed and only just been able to get up but only good enough to sit and do nothing else).

    Im upset about it all.. and as home support person didnt show up on Tuesday (and I wasnt able to get another from the agency that day) ..and then the second home support I requested didnt how up on Thursday (I'd requested 2 support workers at once to use up spare hours.. funded hours I lost as they werent used as only one showed up).... my floors, bathroom and so much else in this house is VERY DIRTY, its discusting (on top of having gear everywhere as well from still not unpacked). At least thou I do have the dishes done!! (we are going to have to move the huge wardrobe sitting in the middle of the dining room...just so we can set up a table to sit at.. that's how unsorted this house is still after the move 3 mths ago). At least I would of had the house looking hygienic if I got the support hours I was supposed to have this week even if boxes and stuff was everywhere.. but due to lack of support.. very dirty house which Im now going to have to hold the party in (which makes me feel aweful).

    I'd been hoping to have the party outside my house in backyard which is tidy..but its going to be hot that day so I wont be able to be outside either. I thought my brother-in-law would be bringing the second hand shed he brought me so was going to get the family to dump a heap of boxes blocking rooms in my house in that..so we'd have places inside to sit..but this morning found out he isnt and he doesnt want to do any work. The party is tomorrow. Ive been crying over the mess things are in and I have no way to fix the house up more at all. (the most Im going to be able to do today standing is to cook the corn beef (which we will be having cold) and make some jellys for family for dessert (which Ive brought yogurt I've frozen to go with).

    The rest of the food Ive been doing over the week with the help of my boyfriend Ive frozen for tomorrow so will just have to throw in pot and heat up then (curry chicken soup, Mandras beef curry). (Im also doing a roast lamb tomorrow.. veg got predone yesterday and frozen except the baked potatoes which I'll need to do on the day as reheated potatoes arent nice). As my family is big .. Im catering for about 30 people.. so its very upsetting that the adults arent going to help me with the house stuff I needed help with :( . (I wish I had a family which knew how families should treat one another.. I often feel like they arent truely my family due to the lack of needed help I get when I have such a large family.. it makes me sad).

    Im keeping secret from my daughter and 2 of my sisters that nearly all of the food was previously cooked and will be reheated as they dont eat reheated things as they are very fussy when it comes to that).
    ........

    I think trouble must follow me around.. yesterday arvo someone got violently bashed right outside of my new house (reminded me of my old street I just moved from!!).. the horrific screaming outside while that was going on (a young girl was trying to stop one person from bashing the other and was hysterical) the whole incident left me a shaking mess (I rang police.. the attack was so violent i thought the person was about to be killed.. I still have pieces of ripped up shirt over my driveway).

    The police actually rang me back about 45 mins later appologising they werent here yet as they were out at another call (ah well guess that says a lot about the police services in this area) and wanting to know if they were still required by then, they werent thou as the person had stopped kicking the other one the ground and punching him and taken off when he saw me at my door ringing the police. Hopefully whoever that was, dont live in this street, uptil now this street has been very quiet. (I should of thought to film the incident to give to police, its only been about 4-5mths since the last bad fight I saw while at home.. ambulance was called that time..Ive no idea how bad the person this time was hurt but I'd think it would of certainly been hurt and may of ended up at the hospital).
  7. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Corned beef and beef curry AND lamb! Are you sure you aren’t overdoing it on the food? What if you would skip the lamb and do a little cleaning tomorrow? Then just explain to your family that your support workers didn’t show up and the usual cleaning didn’t get done this week.
  8. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Cornwall, UK
    Taniaaust1 (and other perfume-sensitives) - you might find this blog about artificial perfumes interesting:

    http://freshairfiend.wordpress.com/

    I don't know if all the links are working as the blog is somewhat dormant, but I'm sure a lot of stuff there will strike a chord, and some may be useful.

    I have perfume sensitivity too, and use the masks sold here:

    http://www.respro.com/products/allergy-relief/multiple-chemical-sensitivity/respro_allergy_mask/
    taniaaust1 likes this.
  9. taniaaust1

    taniaaust1 Senior Member

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    Its far more then the cleaning didnt get done this week.. its rather a fact that due to too little support hours the cleaning NEVER has been all done since I moved into the house properly at all. The home support person may get to do some floors but others arent done and then I track the dirt all over the house again as I wear support stockings. I havent had a clean house at all here yet... its truely shocking (I'll post some photos of what Im dealing with here. I realise Im probably not the only one who has a house like this if one moves and then has not enough help).

    Im roasting the lamb as its just a matter of putting the thing in the oven (and ringing my boyfriend when he does so he can make sure I dont burn the thing.. he sends me reminder messages and if I forget he phones (as with my Aspergers if I get distracted.. I dont hear my alarm go off and with the ME I forgot things when Im cooking.

    The potatoes Im doing today (all over veg previously done and frozen so will be just dumped in big pot for reheating) .. thou I'd love to peel the things.. they wont be getting peeled at all before roasting. (I'll just chop that up.. I did want to cut potatoes ready to go last night and have them sitting in lemon water so they dont go brown but ended up taking myself too my limit last night and today.. my limit is even lower). I spent most of yesterday in bed recovering from Friday and only yesterday managed to do jellies and cook the prepared veg which got prepared by my boyfriend day before.
  10. taniaaust1

    taniaaust1 Senior Member

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    Update

    The birthday party knocked me around a lot.. Ive been in bed 16 hrs per day since then and now all my sleep hours are screwed up with me only being up for a short time during the day (only a few hours) then due to exhaustion falling asleep (after party payback. Party was Sunday and Im still trying to get over it..and its Thursday now). I ended up sleeping right throu nearly all the day and woke up to find it was 1.30am.

    Ive been left with yet another burn due to trying to cook for that party (the arm burn keeps bleeding down my arm from sundays burn). As per normal I wasnt even aware I'd burnt myself till much later when I saw it. (did I share about last weeks mouth burning incident?? I burnt my mouth and didnt know till my yogurt turned all red due to blood over an hour after I'd burnt the roof of my mouth... my mouth was bleeding out of it whenever I opened it for over 1.5hrs).
    My latest burn
    [​IMG]


    My sleep is now screwed due to the long hours Ive been having to sleep, Ive been up since 1.30am and its now going on 7am and I have a heart specialists appointment late morning today (the tiredness will be hitting me by then and its going to be aweful, Im very very tempted to cancel the specialist appointment but Ive had to cancel too many of my specialists appointments of late and dont want to cancel yet another one).

    I think its a likely useless appointment but the dr I collapsed on at the last appointment I went too really wanted me to make appointment with the heart specialist (seeing I refused to allow her to call an ambulance). I guess it will give me a chance to correct something which is wrong in my medical files from last time I got sent to heart specialist (they have in their files that I was had been feeling great when I last went so then put I hadnt had any issues with collapses (which wasnt true).. they certainly mistook me.. I probably replied in regards to my emotional feelings. I would of said I felt great if they hadnt specifically asked me how my health had been doing.. due to my aspergers when asked how I "feel" I usually reply for an emotional feeling which is usually great.. and as they arent asking me specific questions when I go to appointments I often mistake what they are asking and then they do very wrong write up in their notes. My verbal communication with doctors is quite poor.

    This heart specialist appointment will also thou give me an opportunity to ask the cardiologist some questions I had last time but I only got to do tests last time and didnt see the cardiologist then. I want to ask specifically if I could have a mitral valve prolapse as I have all the indications I have one as I have two leaky heart valves which leak in MPV (but they wrongly put it down that I must of had this since birth without consulting any of my previous heart tests.. I never had those leaky valves in any of my past heart tests). So Im also going to take with me the Canadian consensus overview doc which states how MPV can be comorbid with ME/CFS.
    merylg likes this.
  11. taniaaust1

    taniaaust1 Senior Member

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    The Cardiologist Appointment

    Yesterdays heart appointment did turn out to be a quite useless one like I thought it would be. The one who did the echo was very nice and showed me the backflow happening from one of my heart valves on the screen (showed in blue on the scan).

    I struck the same cardiologist who'd seen me 6 years ago and interestingly she remembered me from a very short appointment back then. I wonder if she remembered me as on that last appointment I'd mentioned POTS and she didnt know a thing about it back then and had never heard of it before but this appointment she knew "some" about it but had quite a bit of her info wrong (maybe she went and researched it all from me on that last visit? maybe that is why she remembered me).

    She took my BP and pulse SITTING DOWN a couple of times and then had me stand up and took it once after about 1 min (I assume that was her trying to check for POTS o_O . (she also thought that those with POTS also have BP issues too and wasnt aware that not all do). She was completely unaware that saline is used in severe POTS. I didnt have the confidence at her appointment to start going and correcting her about it all. (she also tried to tell me she doubted I'd have POTS even before doing her very wrong check). Ive got no idea if her one minute sitting to standing test showed up anything, she didnt say nothing.

    The other stupid thing she did was told me she thinks my suddenly collapses are partly cause my legs are weak :thumbdown: even after I told her I dont even get warning all the time when Im about to collapse. ummm if my legs were weak wouldnt I feel them weakening?? and not just suddenly giving way and leaving me so i cant stand back up at all.. it completely sounds like bullshit to me. I think doctors think when we cant exercise much that we have to be weak. So Im now wondering what her recommendation back to my dr will be. (will she in her report say I need to exercise to strengthen my legs so they wont collapse???).

    I wish my brain was working better as I would of queried her "partly caused" by comment and ask her specifically then whhy else she thinks I collapse. I did end up telling her that severe POTS can be treated by saline but she just said she didnt know how that could help at all and I didnt have it in me to try to explain anything any further. (maybe thou she will go and research it seeing as she may of previously researched POTS a little after my last visit to her).

    Anyway .. she was a very nice cardiologist but truely didnt have much idea of things. She seemed to be surprised that a doctor had sent me back to her and was also now surprised that Im now on disability (doh..she didnt understand at all just how sick I was last time I saw her and I couldnt communicate it well to her).

    She was surprisingly interested in some of my abnormal test results and asked for them and took copies of my abnormal EEGs, polycystic ovary scan, MTHFR polymorphism test result and also a letter from my retired specialist about my high BP on standing.. which I thought was unusual for a cardiologist to want to ask for and take copies of some of my other abnormalities other then just the heart stuff and BP letter. (seeing she was interested and asking about things like that I should of then bombarded her with all my other test abnormalites too but as my brain wasnt workin well.. I didnt think to do that so most of my abnormalites remained sitting in my medical folder I had with me).

    I also forgot too, thou I had it with me.. to show her the canadian consensus doc and how MPV is listed as a coexisting disorder with CFS (I usually try to educate doctors on at least something on ME/CFS but this visit was just a bit too much for me so I didnt). I also forgot to try to get the wrong info there in my records corrected.

    I did thou manage to find out that the repat hosp. is supposed to have a tilt table. That info may be helpful to me as thou I know I have POTS and are being treated a bit for it, I dont have tilt table test results which would be harder for any doctor who refuses to aknowledge it to dispute so doing tilt table test would be handy as it would give me that test proof.
    Valentijn likes this.
  12. taniaaust1

    taniaaust1 Senior Member

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    I NEED a scooter :( , Sharing what a currently regular shopping trip is being like for me

    Yesterday was one of the regular disaster days Im having. Im still ending up on the ground or floor of shops 2/3 of the time when Im taken out by someone. I try to do my shopping missing many of the supermarket rows and as fast as possible as its very hard on me to remain on my feet for a visit to the local Woolworths supermarket.

    I had about 15 things on my grocery shopping list (can often manage that but when it goes longer I cant and will be sure to collapse). I was to get the last item when the POTS hit hard and fast, knowing I was about to faint, making me need to pull my cane chair out of the trolley and sit down. The big issue is with that chair is it leaves my legs down, thou I got a little better (by that I mean I wasnt going to immediately faint as I'd been about to but was still very bad), I couldnt get completely over the POTS and knew I was in trouble. I spent 5 mins sitting on the cane chair but could see it wasnt going to help me any more then it was as my legs were needing to be up, my brain just wasnt getting enough blood.

    I found the needed item while still sitting on the chair, got up and grabbed it and made a dash to the checkups (where I was either going to sit on my car chair again and leave boyfriend to unload my trolley or was going to get helped to a bench to lay down 10m from the supermarket entry. I knew I was going to be lucky if I could make the 20m to the checkout without going down. I JUST made it grabbed my cane chair out but what time my body was shaking so badly that I couldnt sit on the chair and fell to the floor.

    I was now on the floor of the checkout asle, unable to do a thing, right on the edge of unconsciousness, unable to even semi sit as sitting was going to make me faint completely every time someone tried to semi raise me (hoping to be able to move me), I'd go into bad shaking and was about to have a seizure. By this time there is a crowd of people around me, store workers, other people out shopping and by this time even the store manager. My situation had attracted so much attention that by this time not just one supermarket asile was blocked but possibly two due to all the on lookers. (at this point had I been alone an amubulance would of been rung but thank God I never go out alone. The store manager is trying to manage to crowd control with all the onlookers and my boyfriend is trying to finish my shopping).

    I ask the store manager to block off the asle to stop people gawking at me on the floor (it was blocked anyway as no one could use it with me there) so a trolley is placed in front of where I are so to try to bring less attention to the situation. The store manager has gotten one of his workers to go and get a pillow and not understanding POTS, puts this under my head. Im finding it hard to tell him his kindness isnt of help to me and in fact is hindering the situation as I need my head flat and feet up to start to improve. Store manager is then holding cups of water, trying to help me drink. By the end of the second cup my boyfriend has finally managed to get all my shopping throu the check out working around me (as I really was in the way but couldnt do anything about it). I get my boyfriend at this point to pass me my handbag so I can raise my feet up with it.

    I have no idea how long I spent on that floor but it was quite a time... up to an hour (some of that time I was really debating if we should ring an ambulance just to get me out of the store) before I could just sit up and we managed to get me the 20 metres further on to the bench for me to lay there. Next issue was.. how to get me to the car? The disability parks outside the store had been full when we had arrived so boyfriend had to park 15 metres further even if disability park is now free I still going to not be able to get there alone and can often need two people to help me walk when Im like this as my legs wont support me so they have to take my weight and I cant coordinate them well when Im like this either.

    After laying on the bench for a while and then being okay to sit by myself, my boyfriend and I spend 5mins trying to work out what to do. We decide that he leaves me while I further lay, while he puts the groceries in the car and then brings the trolley back to me for further support to try to get me to car. He does that and comes back but we still dont know what to do as Im still not good enough to walk to the car and he's going to have to leave his car in zone immediately outside the door where cars arent supposed to be at all (we have got a fine in the past over my collapses). Another 5 mins passes by as we further try to plan out how we are going to get me out of here without me on the floor again back to square one possibly needing another 30mins-1hr on laying if moving me makes me extremely bad again to the point where I cant be raised up at all.

    A nurse ended up coming over who must of seen me on the floor of the supermarket earlier (maybe she even helped me at that time but I have no idea who did except the store manager as I wasnt well enough to have been aware of my surroundings well or those who had spoken to me thou I did remember a female voice, so someone else had helped when I'd been close to complete passout. A woman, I presume medical person, had been telling my boyfriend not to try to sit me as she had been paying heed to exactly what that was doing to me and the degree it was causing me to shake..near seizuring. My boyfriend kept on sending me almost completely unconsciousness, if that other person hadnt stopped him, I would of been so).

    So thankfully there are now two people to get me to the car. I start walking using the trolley for support with the nurse ready to grab me if needed and my boyfriend near the car ready to help me at that point but also ready to came back to me if we need more help eg if I needed full carrying.

    Im so off balance that letting go of the trolley to try to get into car.. I loose balance and start to fall, someone grabbed me so I didnt go down on the concrete, they helped me into the car and Im taken home. Had to be helped from car to bed as still not coordinating legs well and by this time I had weak legs happening too and was spasming and shaking with brief moments in any kind of upright positiion.

    Boyfriend puts my shopping away and leaves with me still in bed.. he's going to be late again to his home. Im wanting comforting and crying a little over the whole embarrassing incident but he cant stay. I have no idea of what the time was but it would of been around 5pm. (what should of been an easy 30min shopping trip with 2 people had gone into a hellish experience taking something like 1.5 hrs). He sets me up with drinks and puts a DVD in for me as he leaves but Im starting to fall asleep even before I press the play, the POTS crash has left me even more tired. (I was already tired as the Disability Agency had been texting/ringing me that morning at times when Im still using asleep and I hadnt been able to get back to sleep this morn).

    I sleep then from around 5pm to waking up a short time ago only to find it was now 3.30am :( so that has really screwed with my sleep hours again. I even slept throu dinner time and didnt even get lunch (I'd been going to eat that when I got home from shopping but was then too ill with the POTS).

    This arvo I have a home appointment with the disability as they have found me another support worker, so its a meet and greet appointment but I can only hope this one can handle my collapses seeing the last didnt handle them well and her response to them really upset me so I ended up sacking her from being my worker. The whole situation with my POTS not being treated properly and the issues that then is causing me is ridiculous. It makes me feel angry at the medical profession as the POTS symptom of ME IS treatable and hence I just shouldnt be finding myself in situations such as this.
  13. taniaaust1

    taniaaust1 Senior Member

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    Update

    Had the at home meeting with the new support worker and the agency coordinator?, the new support worker seems nice. We discussed how we are going to deal with my current situation where Im seriously collapsing so much at the shops when taken out. One of them suggested that I be taken to a bigger shopping centre outside of my local area as the bigger supermarkets have wheelchairs available where the local one doesnt. The issue with that one thou is the state disability agency who funds my home support wont allow them to take me outside of my suburb so the bigger shopping centre, thou only 10-15 mins away is out.

    So we've ended up deciding that two support workers will have to accompany me whenever I go to the shops (cause it takes two to carry me back to a car if needed, that's what was freaking my last support worker out). Hopefully this idea and using two workers out shopping, will not interfere with what manages to get done in the not enough time hours already support I have. I think if I can keep them both on the move at once (make up two shopping lists and hand one to one of them).. we should be able to get my shopping done twice as fast so still get the other things done which I need to get my support workers to do. Less time out will also mean Im less likely to collapse.

    I have another home meeting with the other new support worker I havent met yet on Tuesday.
    GcMAF Australia, Valentijn and merylg like this.
  14. Valentijn

    Valentijn Activity Level: 3

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    How awful :( Though I'm seriously very impressed with how brave you are to go out and do stuff when you risk collapsing. I know how uncomfortable it can feel to "cause a scene" or be sick and weak around other people, even when it's family and friends - can't imagine how horrible it is around strangers.

    A mobility scooter is a huge help, especially if you live within scooting distance (a kilometer or 2) of a shopping area. I can't get inside all of the shops with mine, since some have very narrow aisles, but at least I can park right outside the door, and keep the trip inside very brief. Even with my OI usually not a problem (though it has been lately, concurrent with infections), the walking itself is enough to wear me out.

    Though even with a scooter, I still have limitations - the scooter is for good days, because on bad days even sitting up a while and paying attention and holding the accelerator is enough to do me in. Also, even collapsible scooters are a bit of a pain to get dismantled and into a car, then removed and reassembled, and take up a lot of room. Mine is a biggesh/powerful model due to my weight being a bit too high for the tiny ones, and it takes up the entire back of the car with the back seats folded down. We should be able to get a bigger car soon (new job for the fiance, and it comes with a new car lease), but currently we can put the scooter in the car OR put flowers from the local garden center into the car, but not both ... so either I send my fiance (no color style sense) to buy flowers, or I walk through the garden center and crash.

    Other problem is expense. And since you have ME/CFS instead of a "cool" disease, it might not even be possible to get government assistance in obtaining a scooter. But you might at least be able to get a collapsible wheelchair. Those can be very cheap, and help in at least some situations. Maybe you can't push a cart while your support worker pushes you around the store, but you could hold a hand basket in your lap, etc.
    taniaaust1 likes this.
  15. Robyn Reid

    Robyn Reid

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  16. Robyn Reid

    Robyn Reid

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    Hello taniaaust1, Sorry to hear of your condition. I have a booklet "Magnesium, Zinc, Iron, Copper & other trace elements" written by a doctor Igor Tabrizian which could be of great benefit to you and all health care professionals. The allergies you explain appear to be caused by lead or copper excess, thus leading to molybdenum blockade/deficiency. This man is a wizard in nutritional medicine and practices in Perth, WA. This must read can be purchased on the internet at www.nutritionreviewservice.com.au for about $28.
  17. taniaaust1

    taniaaust1 Senior Member

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    Hi there :) Thanks

    I dont know if you saw in my thread but I do have a molybdenum defiency and only a very slight trace of it in my body (any lower and my level would be a complete 0 .. its .001 (one really has to wonder what that is doing to me as babies with no molybdenum die) . A hair test also showed extremely high copper (I was almost off the graph). Ive been working on fixing both these things now for over a year (taking molybdenum supplements etc, Im not sure if Im doing enough to sort out the copper thou thou I take selenium..no doctor other then doing standard blood tests which are well known to be inaccurate, has had me do a heavy metal test so my copper issue has been basically ignored). Its another thing I want to do at some point, see a doctor who is very knowlegable about heavy metals and good testing for them.

    I have a lot of issues which doctors have not well addressed yet (and due to my issues getting to doctors even things I have doctors willing to try to help with, I arent getting sorted out).
  18. taniaaust1

    taniaaust1 Senior Member

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    My boyfriend brought up the subject of scooters the other day, I think he's thinking I should have one (maybe he's thinking of advocating for me to the doctors etc?) . My local shopping centre is just down the road and if I had one it would give me a lot more freedom. sighs.. yeah that is the thing.. ME/CFS isnt seen as a valid disease to be able to get the states disability system to help us get the aids we need.

    Sometimes I think Im crazy going out like I do (thou only with a support person) and end up with this bad stuff happening to me over and over. But Im DETERMINED not to allow this illness to get me down and these trips out are a very important part of my emotional health when they do go well.
    Valentijn likes this.
  19. taniaaust1

    taniaaust1 Senior Member

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    A trip to Centrelink

    Ive been living in this house now for several months and due to the daily struggle, I havent got around to changing my home address with Centrelink (tried once but couldnt wait on the phone so hung up) and it turned out I needed to do so urgently (to get a free setbox for my tv so it will keep working, due to a changeover the gov is doing which had to be sorted out by the end of the month. When I rang they said they couldnt do it unless my Centrelink address wasnt matching my home address).

    So I ring up Centrelink again to tell them Ive moved.. only to get the message on the phone that there was going to be OVER an 40min wait. Well I was stuffed at that as I cant hold a phone for that long.. it would kill my arms and make me unable to use them for rest of the day etc. So I asked my boyfriend to take me down to their office as it isnt far away.

    We arrive there and there is a HUGE queue (someone in the queue was actually saying she'd been standing in line for 1hr 45mins!! and she still had about 15-20 people waiting in front of her, how crazy is that.. why doesnt the dole office dealing with the unemployed give someone a job there!!). I of cause cant even stand in queues for minutes and there is no way I could even sit with my legs down for that long without a collapse. So I pushed myself in at the front and told the lady I was sick and disabled and needed to have a spot to wait with my legs up as there was no way I could wait that long and I needed to be seen fast (something which was ignored). She lead me to some seats in another area and I then used my cane chair to put my legs up on (its very handy for that, something I do often).

    We waited and waited and waited.. no idea how long we waited , but it was over 90mins. I couldnt rest properly in that environment but thou wait was annoying and I knew not good for me, I thought I was doing okay. I was stressing thou as my boyfriend has very limited time with me and had to be else where. It ended up being well past the time he should of spent with me (which would of got him into trouble). We nearly had to just up and leave after all that time but he stuck it out thou he knew he was going to get into trouble for it, as he knew I'd be very upset after all that wait and effort I was putting in, if we just had to leave. It was so crazy in that Centrelinke office that closing time came and they started sending people home in the queue who'd already been waiting over an hour, telling them to come back next day. So now its well past closing time... and we are still waiting. All this trouble to update their records and change my address which had to be done fast.

    FINALLY I get called in. I manage to walk okay to the desk and sit down but on going to leave after only 5mins there.. well I find I cant stand, I majorly wobble with leg weakness when I try. My legs arent going to support me, Im now stuck in Centrelink!! A bad situation is now so much worst. I tell the Centrelink lady I need help getting to the car outside which is parked in their disability park.. only to be told, they arent allowed to do that due to their health and safety policies (need to protect their backs etc). At this .. I emotionally break down and start to cry at my hopeless situation as there is no way I can get to the car and my boyfriend is never enough to be able to get me to a car alone.. not strong enough and Im too the point where I basically almost need to be carried. It takes two people to help me when Im like this. Im stuck in Centrelink, past its closing time and really needing to be home. What a nightmare!!

    At my emotional breakdown (I couldnt help it.. my crying on this occassion was loud.. I bawled cause I just didnt know what to do and couldnt see a solution except ring ambulance to get me out the place, things seemed hopeless), unfortuantely got me much attention.. suddenly Centrelink people are everywhere around me (4 of them, maybe more). including I think their counsellor (who made some stupid comment as she didnt understand the reason why i was crying.. cause I was stuck there and couldnt walk). One of them ended up suggesting they push me on one of their wheeled office chairs to their front door and then leave me there to walk to car (this was even more embarrassing to be wheeled to the door of centrelink on one of their office chairs then even the crying in front of everyone, the chair wasnt all that stable either and I kept thinking.. is the wheel going to break).

    Im sure they were proud of their effort in getting to the door (in my head I was playing out them all invisibly cheering) and I was happy to get at least to their front door but what now??? I still cant walk!! but as they refuse to help get me to the car in their carpark (something which would of only taken someone 1-2 minutes).. so II have no choice but to try thou I know Im going to fall. My boyfriend took one of my hands and I used my car chair with the other.. I made it only a few wobbling steps before I heavily fell ..this time right on top of my cane chair (the suddeness of my fall and my body weight, wrenched my hand out of my boyfriends hand). I could of been injured by the fall on top of my cane chair, I really crashed down.

    Once again Im surrounded by Centrelink staff.. this time wanting to know if they should call an ambulance and are I injured? Im very surprised I wasnt injured this fall.. not often can I come down on top of something and not injure myself (several of them had seen how hard I fell.. cause of the whole spectical of having someone/me pushed to the door in one of their chairs.. it was like the whole office was watching, they probably were).

    At this point .. a centrelink person did decide to help my boyfriend get me to my car (which was only about 7-10 metres away.. it sucks that they didnt help me in the first place with that when I really needed it.. due to their "safety policies".. What about the safety thou of their clents?

    When will gov depts start listening to people who have "invisible illnesses" and who have special needs? , they only pay attention to you when its TOO LATE and you have reached the crisis point. (its upsetting I went throu all that cause I was ignored when I said.. I cant wait too long and need to see someone fast due to the severity of my health issues... over 90mins isnt fast.. why couldnt they quickly just taken down my new address?? I told them I just there for a change of address). I wish there was something those who have CFS could carry with them which makes people aware that you need to be listened too or its disasterous. IF I was going out alone to places.. the ambulance would be being rung all the time due to these situations .

    Anyway..that's my whine for today.. another situation which shouldnt have happened and only did cause my health needs arent being met..

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

    I didnt get to have a good meeting with the new home support person as she arrived wearing PERFUME. No one at Community Support Incorporated (CSI) had told her that I cant be around many perfumes.. :( I seem to be telling agencies and others the importance of this over and over but this ALWAYS happens. So I had to kick her out of my house and try to talk to her throu a door. It wasnt constructive at all and I guess she got paid for this out of my funding hours (the other support worker on her meet and greet meeting.. then did some cleaning.. I suppose this one may of meant to have done that to). How on earth does one get throu the people and get them organised enough to be doing good care things and agencies not to keep stuffing up?
  20. Lynne B

    Lynne B Senior Member

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    Hi, Tania, I think Valentijn has a good idea about getting a collapsible wheelchair. It'll mean your disability will be visible and people will be more interested in helping. Also it could save you from all those falls, which would be a very good thing because sooner or later you could get seriously hurt. I think you can get second-hand collapsible wheelchairs if you ask around. Then your carer can push you and you can have a basket for the goods, as Valentijn suggests.
    cheers, Lynne
    taniaaust1 likes this.

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