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Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
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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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    Another DisabilitiesSA home visit, also a bad crashed day

    My reply to heapsreal last post updates how my Temazepam trial for my sleep and trying to move it forward is going.

    On Wednesday, I had another home visit appointment with the guy (David Falgenhaur) from DisabilitiesSA to discuss how my application for home assisstance is going.

    Once again disappointing news.. he said it could take 4-5 months more to be sorted out. He said there are issues over which dept my case should be under.. whether it comes under Disability orgs or if it comes under one of the health org (he didnt say what health org thou when he said that) as both orgs want the other org to take it and say it comes more under them as they themselves dont want to be funding home help for me due to trying to keep clients down.

    So Im left with my case is caught up in the beaucratic system of what does ME/CFS come under.. is it a health issue or a disablity issue?? and cause the orgs cant make up their minds, its leaving a big loop hole in the system for me once again to be falling in between the gaps. (unless they are using a delay tactic hoping I'll just go away? or suddenly get better?).

    Last home visit he did, I was having one of my normal good days (normal as in sitting around doing nothing so not to trigger off symptoms), this visit thou, I was in a crashed state so he actually got to see how I sometimes are (something the doctors dont get to see as I cant get to the surgery when this bad). The previous day had been too warm for me and triggered off a ME crash the next day (interesting I hadnt been too badly affected in the heat with the major affects of it hitting me next day... delayed heat affect).

    I was so severe that I couldnt walk. My boyfriend arrived before the guy got here and I'd twice attempted unsuccessfully to get and stay out of bed.. both times resulting in me coming crashing to the ground. Interestingly when I first got up, I'd felt fine but after walking around my house for 5 minutes and then suddenly I was on the floor completely unable to get up again. My boyfriend was standing along side of me when I went down and didnt have time to grap me as I went to yell to him to do so. I went down so fast I couldnt even get the full words "grab me" out of my mouth.

    So I then stayed in bed for the next couple of hours hoping I'd be out of bed by the time the guy arrived but to no avail. By the time he'd got here.. I was all smelly due to lack of showering for previous couple of days and in need to get to the loo to which we then got him to help my boyfriend take me there.. one each holding me up on each side.

    Before the DisabilitiesSA guy arrived, another attempt to get me out of bed, which once again found my legs shaking and completely unable to support my body weight when it was put down onto them.. resulted in my boyfriend having to bring a bucket into my bedroom to pee into (which boyfriend helping me to balance) or I would of wet all over the place. I couldnt even walk to the toilet with him supporting me.

    I attempted to brush my teeth but was too weak so ended up handing toothbrush to my boyfriend to put somewhere and boyfriend helped me with a glass of water after due to lack of coordination and weakness (glass of water was so heavy for me it make my hand shake.. just weight of holding my hand up make it shake).

    I ended up dropping the first drink he brought to me from the bed onto the floor.. spilling my drink all over the floor (and almost smashing the glass). (At that point we settled on him filling up my drink bottles so I could drink from them more easily.. I dont know why I even attempt to drink out of a glass when Im that weak and shakey).


    After I was helped to the loo.. boyfriend and the guy went to the loungeroom and I tried to join them from there when finished, only to end up once again crashing to the floor, this time in my hallway (this time hurting my ankle a bit as I went down). So by that time, with me completely fed up of falling, we ended up holding my home visit in my hallway with me still on the floor. I pointed out my bruises (both my legs are currently bruised) from previous falls and knocking into things due to poor judgement and instability to the guy..

    One good thing is the guy agrees that I do need home help.. but its just a matter now of no org wanting me and saying the other org should be helping as they argue if my issues are disability or health. The whole thing is pathetic, recently I spent 15 hrs straight (actually that has twice happened in past 2 weeks, too bad to even get up to get myself a drink or food during that time and laying in bed thirsty and awaiting for my condition to hopefully soon improve so I can walk).

    He said he'd visit again in 2 weeks to let me know how my application is going. Even with me bedbound at times unable to get myself a drink.. my case for home assistance isnt seen as an urgent one. As Ive told the guy a few times.. if it wasnt for my boyfriend visiting me twice a week, I fear I could end up stuck in bed and dying at some point due to not being able to get up or striking my head when I fall.
  2. taniaaust1

    taniaaust1 Senior Member

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    Im so hoping Im not severely sick tomorrow. Today was another hot day... last time there was two hot days in a row (only the other day), it caused me to crash. That time in yet a different way to my current normal crash (where I just are weak and cant walk etc.. I crashed into old symptoms of mine).

    Last crash i had (one since the one in which that guy was here on Wed).. was just a short one of a day but I felt so dreadful that I ended up having to take my anti nausea prescription drug Metoclopramide as I was feeling so so sick. (thank goodness I have those, that got rid of the nausea)

    I also had neck pain (left back of neck which was flaring a few inches down my back neck) along with left shoulder pain on the same side. It was just like some kind of inflammatory process was flaring up which certainly was triggered off by the heat wave preceding 2 days. I also have my period right now (after 42 days.. my hormones this month are screwed up even more then they usually are) but the pain of that was no where near as bad as the joint pains I was getting. Weirdly with the longer menstrational cycle I got far less pain with it then I normally do (often severe).

    Also had all over muscle pain thou that wasnt too bad (pain rating for muscle pain 2 out of 10... joint pain was worst at about a 3 or 4 and almost making me cry with the discomfort).

    When I walked... I was walking listing to the right side.. very hard to walk in a straight line, I kept on bumping into the wall when trying to walk down my hallway. When I looked at myself in mirror, I noticed I was all crooked, shoulder dropped, head more to one side.. probably all why I couldnt walk straight.

    Why do body stressors eg heat give us inflammatory symptoms? I really wonder what is happening in our bodies.

    It is annoying me that Im crashing due to something I cant control.. the weather. (I cant afford a better air con then the small portable one I have).
  3. taniaaust1

    taniaaust1 Senior Member

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    ***warning graphic description of female issue*** Disaster at restaurant

    Due to the hot weather I just couldnt stay in my house (evaporative aircon just not enough), so my sister got her kids babysat and came and picked me up from the city to go and stay with her for a few days till heat wave passed.

    It was her daughters 8th birthday so we went to fancy restaurant to celebrate it. I phoned ahead to make sure there were going to be foods on the smorgusbord I could eat or else I wouldnt go. There wasnt as they had added sugar to everything (only meat with it not added) but the cook of the place was very nice (he had been diabetic since a child). He spoke to the manager and got things so I could buy a menu meal and eat it in the smorgusbord area.
    I ordered soda water and added the no carb lime stuff I had to make my own drinks.

    We'd just finished dessert (something I couldnt have due to my food issues so I was just sitting there watching everyone else eat it) when suddenly I flooded, feeling it suddenly actually gush from me :( (with menstration). I jumped up and ran for the bathroom. (I was wearing a super tampon and a pad both which I only put in an hour before).

    To my horror not only was my knickers all blood soaked but there was a MASSIVE clot hanging out of me which was an inch wide and 10-15 cms long (hanging out in a different place then my tampon cord.... thank God that clot didnt run down my leg when at the table like some kind of mini placenta). I dont know how big it exactly was as it ended up in the loo which was so blood filled I couldnt then see the clot in there. I ended up having to put my knickers in my bag (so then embarrassingly knickerless in restaurant) and go and tell my sister I had to be immediately taken back to her place.

    At this point they all decided to leave due to me, so I cried all the way back cause I feel like I cut the birthday party short. (people didnt get a chance to have coffees etc). I still feel quite bad about it all and still need to get rid of this guilt feel of ruining the party. (This is the kind of things I have counselling for).

    Sister on way home stopped at supermarket and went and brought me the maternity pads usually used for right after giving birth. I doubt even one of those would of caught the amount I very suddenly bleed (probably about 3 quarters to 1 cup.. mostly in the big lump). Strangely this all happened right towards the end of my period and by the next day it had almost completely stopped.

    I wont go to the gyno for this as she already wants to give me a hysterectomy just due to my hormonal issue and mood swings caused by them.

    Ive flooded bad before but it hasnt happened in a while and I think that is the biggest clot Ive ever had. I still cant believe of the bad timing of it all. I hardly ever leave my house and it just had to happen while I was out in an expensive restaurant. Trying to look on the bright side, it could of been worst....

    One weird thing about things this month was I had almost nil pain at all with my period thou things were like that. I often get SEVERE pain with it.
  4. taniaaust1

    taniaaust1 Senior Member

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    Third and Final visit to CFS specialist Dr Buttfield. The good and bad.

    I really dont know where to start with this post.

    I told him that the dosage of Temazepam he'd put me on (10mg) did nothing at all so that I'd put myself on 15mg. He was fine about me having done that (I got no lecture on increasing meds without medical advice like I'd feared). He then said I can take up to 20mg of it for sleep. He then gave me a new prescription for 20mg.

    I hate constantly having bad things to say about doctors but he's really annoyed me. On talking about my collapses to me he said he wasnt convinced it wasnt "nerves". Having no idea what was meant by that I asked him to clarify "nerves", he then went into the explaining of illness "behaviour" and how he'd expect me to have it after being sick for so long. I took this to all mean that he thinks my collapses may be in my head!!

    Anyway.. I dont think I need to explain how he made me feel... I felt so angry but most of all upset by the comment (I ended up crying in my appointment). yeah sure... I can suddenly be having a happy chat WHILE STANDING to my boyfriend and have my legs suddenly give way as if someone has just ripped them out from under me, is due to subconscious thoughts or whatever. Have I subconciously programmed myself to sudden collapse (so fast i didnt even know it was going to occur at times) while standing even thou Im engrossed in whatever Im chatting about. What shit.

    He completely didnt listen to me about my past attempt to excerise regularly and then recommended GET and said it had been proven by PACE (and my brain wasnt with it enough to argue about PACE study at all so unfortunatly I was unable to do so which then left me feeling completely powerless). I think it was at this point I cried.. anyway.. his comments and him not listening and igoring my past experiences with what he was telling me about made me cry.

    Im soooo glad I am not seeing him again and Im sad that he's retiring with the view to be training other doctors in CFS. He really needs to be looking into things more. Unfortunately he's had contact with my new doctor so I assume he's told her Im probably exhibiting sickness/illness "behaviour" too and he said he'd been passing on his recommendations for me to her.. that is the GET.

    He went on about psychologists and how I should be seeing one and then was very pleased when I said Id been seeing them for years. (I didnt tell him the reason I see one is to help me emotionally deal with others behaviours, such as doctors not listening to ones disabling symptoms. I need somewhere to let my emotions out about the crap I go throu due to OTHERS beliefs).

    What happens with my new GP I now dont know as she said she wouldnt see me without me being under a CFS specialist and I dont see another new one now till next month.

    Its really a bitter/sweet thing. I went and saw him already suspecting what he'd be like from a CFS talk he gave (there was some indications there). I did get what I needed from him .. pills to help me sleep, so I are greatful for that and greatful for him for seeing me when he wasnt taking on new patients due to retiring. I just really hope I can get some new pills from a new doctor (or the other new GP will keep seeing me) once these are gone.

    I cant wait till the day our doctors are better educated about our illness and in which even the CFS specialists arent going by flawed studies.

    He also did a letter for me for the motor vechile and licence place to say that I should have my licence back. He was understanding that I wouldnt drive at the times I know Im unsafe to but would like to be driving again hopefully at some point in the near future, so wanted my licence back.
    ......

    Wednesday I possibly have that guy from DisabilitySA coming to do a home visit again (third visit I think it is.. I keep thinking they are trying to stall home help).. so I guess I'll be writing again then after his visit. He's been in contact with the CFS specialist I saw so hopefully he hasnt been told by him the illness is in my head. (Im concerned about what he's now been told and hence how he's going to be.

    I know im going to cry again if I get told that my legs giving way making me fall is all in my head. The guy already beliefs that all CFS people are depressed, so crying in front of him is the very last thing I'd want happening and Im going to be annoyed at myself for allowing myself to do so if it happens. I dont know how to get throu to them that Im only upset when they say idiot things about my illness. They would be unwilling to believe they are the cause of my tears during appointment and that I rarely cry (only when things are really going wrong).

    (my current emotional state.. quite angry, fed up at not being listened too and not recieving the help I should be).
  5. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Tania sorry to hear about your appointment. I think what you need to do is take from him what u find valuable and what isnt leave behind. Generally 99% of half descent docs are only really going to be able to help you with medications for symptoms and monitoring you through blood tests. If i were you for the moment i would just use him for these things while you keep looking out for other alternatives etc. I have one doc who helps me out with non cfs related stuff and some cfs symptom prescriptions and another, my cfs doc who monitors my immune and infection related stuff as well as attempting/trialling cfs treatments that are abit out of the box for regular docs. Having a good doc is important but also we need to try and doctor ourselves the best we can as well.

    Stay positive,
    cheers!!!
  6. Valentijn

    Valentijn Activity Level: 3

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    I hate going to the doctor and not being able to remember important things or form coherent responses that I would have no trouble with if I weren't light-headed, exhausted, and upset. I think I'm going to take a list of "talking points" and maybe print-outs that are likely to be relevant to future appointments, if there's a chance my problems are going to be met with skepticism.

    I have an appointment on Monday with my GP (the only person I've met in the Netherlands so far that thinks ME is psychological) to try to get a referral for light-headedness. I went to the office early in the summer for the same problem and was told by her temporary replacement that since it was an ME problem, she couldn't help me unless I had low iron causing it.

    So I think I'll take a copy of the CCC with me, which specifically mentions NMH, and any other basic literature I can find on it. As well as a copy of the recent email from the ME/CFS clinic telling me I'd have to go to my GP to get a referral for the light-headedness, instead of getting it from the clinic. It's surprising how unknown NMH is, even at clinics that use the CCC.

    I'm sorry your doctor was such a douchebag, but I'm glad you posted about it, since it reminded me that I really need to prepare for a similar reception.
  7. taniaaust1

    taniaaust1 Senior Member

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    nods yeah. It was sad thou for a CFS specialist to have that opinion of things.

    Cant stay with him as he's now fully retired, that was his last week of practice and he's not seeing any patients no more.

    He's the CFS specialist who wasnt taking on any new patients (but I managed to convince to see me for just a few weeks. I ended up going to him 3 times in past 5 weeks). He didnt know of another ME/CFS specialist to refer people to.. he mentioned Dr Del Fante but said no one can get in with him (at that point I informed him it is Del Fante Ive managed to get in with in Feb after 3 years of trying but have to wait for that first appointment to come up. It sounds like all Buttfield's CFS/ME patients have been left with no one for him to refer them onto with his retirement).

    nods. I dont seem to see doctors for anything except ME stuff (well rarely.. used to go to doctor only about once every 5 years before I got ME). Im more so into herbal medicine and can treat most things myself.. its just this ME stuff has been very hard to treat naturopathic wise. (I was studying to be a naturopath when I first got ME). Even the CFS specialists when one manages to get one, expects one to have a GP. All the CFS specialists Ive ever had expected me to have a GP to be following up what they are saying.

    Im also unable to hide from a doctor the ME due to the severity that my symptoms often are even if I was into going to them for other things. Ive had one make me go to hospital in ambulance on examination of me cause he didnt understand the ME symptoms and what he saw. (ME was giving me unequal pupils, hyperreflexia and I was in tremors and also couldnt walk straight which he'd seen me fall into the wall while trying to get to his room.. I wasnt even there for the ME but he freaked at it). That GP after sending me to hospital as he wouldnt believe me that my symptoms were ME/CFS related then refused to see me again when neurologists at hospital said it was all CFS related. Ive had so many different GPs abandon me or say they are okay with me having CFS and will see me.. but then not want to see me anymore as soon as they see it causing extreme symptoms.

    Others havent been comfortable even working with my CFS specialist when I have one (due to their own beliefs of the illness, Ive had quite a few not want to have me as a patient even when I have a CFS specialist giving the instructions)

    I also have the issue of MCS.. so cant get drugs for anything (other issues) without warning them that I could react to things (and need those things always on my medical records in case of emergency eg Some anethestics I get extreme neurological reaction after effects too.. I had a severe 3 day side affect with bad neuro symptoms (made me unable to walk...caused much seizure like activity and gave me extreme pain) to one which that had adrenaline (I didnt know till later that Cheney recommends that one not to be giving to ME people).

    I tend to get reactions to those medications which many ME specialists say for us to avoid. I end up in hospital a lot (5 times last year) so the meds I do have proven reactions too all do need to be on my medical notes with warnings Im more likely to react to meds.


    My new GP .. took some convincing to take me on.. and I only ended up getting her to as my PCOS and female hormone issues (she said she specialised in female issues, so I ended up using that as a reason why she should take me on). And even with that she said she wouldnt take me on as her patient without a CFS specialist being involved too and even then was reluctant. I doubt very much she will see me again for anything till I get in with the other specialist.

    It hasnt been a case of me going from doctor to doctor due to giving up on them (I only gave up on CFS specialist before this short term one after 4 years of him ignoring and not treating my insomnia etc and on my GP after 3-4 years ..final straw being of him saying I wasnt at all disabled when I said I needed him to fill out forms for disability parking due to people so often having to carry me). all the issues I go to doctors/specialists for are basically ME related (except the specialist/allergist for my insulin and the gyno for my PCOS etc).

    The whole time Ive had this illness.. medically, we've never been able to catch up with it (most of my symptoms havent been tried to be medically treated yet) or in other ways either eg the paperwork it causes. Im constantly needing to go to the doctors or specialist for something or another (even with 2-3hr appointments my other specialist used to do.. never able to catch up during appointment). eg Right now needing someone to work with the home support people to sort out the mess going on there, the org dont know if ME is a disability or an illness and I need someone in my corner to be pushing them to get me supported.

    Also currently needing a GP or specialist to do letter to housing trust as I need housing modifications and the shower rail Ive broken 3 times due to using it to try to stop myself falling.. is broken again (currently hanging off the wall). Till its fixed again, Im at risk of a heavy fall. They need a doctors letter as it needs to be replaced with another kind which arent going to break. Im constantly needing medical letters for various ME things.
  8. health_seeker

    health_seeker

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    Hi taniaaust1:

    Ive just been reading your journal for the past hour or so and wanted to respond. I dont post very often because being blind and relying on speech and Braille to navigate the site, it takes a lot of time and effort for me.

    I just wanted to say that I really respect your keeping going when faced with such severe symptoms for so long. I think I would have given up trying a long time ago. How insulting and upsetting for you for that doctor to think your dizziness and problems standing were psychological. Good job that the old sod is retiring. I hope you have more success with the new doctor youre seeing.

    I was curious if you have ever had any adrenal testing done? When my cortisol is low I find I get increased symptoms of inflammation. Also, before I got on the right level of adrenal support, I had a lot of problems with hormone imbalance. I remember the menstrual flooding only too well and how embarrassing it can be. Would you consider going to a doctor who uses natural hormone treatment and is this an option for you? In my experience doctors who use bioidentical hormone replacement are much more open to treating low functioning adrenals than conventional doctors.

    Ill be interested to read how your visit goes with the CFS specialist and researcher.

    Keep writing!
  9. taniaaust1

    taniaaust1 Senior Member

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    Thank you for your post healthseeker. Do you have ME/CFS too? I cant imagine what that would be like to have this illness on top of being blind.

    Im in a situation where I dont have any option really to just give up, its not a case of being brave but one in which fear pushes me on. Ive been far far worst in the past and dont know if my health will hold at the level its at now, so need to push things when Im like Im now and able to actually do so.

    Yes Ive had some adrenal testing done (not enough thou). Ive had 3 24 hr urine cortisol tests done at various times, they come back out of normal ranges, too low. Normal amount for the test was 50 to 350 my levels thou were 47 and 49 . If Im very stressed and over exercising and in bad pain for the 24hrs the urine is being taken, I can get my level up to 51 (so then only just within normal range). I think such a small increase of cortisol with pain and exercise show my adrenals dont respond well at all to stimulation. My levels shouldnt be under normal range either.

    The only other cortisol tests Ive had done is morning blood tests. Interestingly my morning cortisol level is always at mid range so I must be hardly producing cortisol at other times of the day.

    I did try to supplement my cortisol with hydrocortisone for 6-8 weeks at the extremely low dose which some ME specialists recommend. I found it didnt help any of my symptoms thou so I stopped it. Maybe it wasnt enough thou? (I know some ME specialises are giving more then what I was trialing).

    I dont have any idea if the more my cortisol is down, the more inflammatory symptoms I have. (havent had it tested enough to find that out) but as far as I can tell from my tests, my cortisol just sits at around the same level and hardly changes in amount in 24hr testing no matter if I have a lot of symptoms or not.

    A doctor prescribed natural progesterone for me which I tried for several months (to address the imbalance and excess estrogen I have). I noticed no benefits in using it.

    Ive also had a testosterone implant for 3 mths (to address that test results showing that body is very deficient in that). I was seeing a gyno for that issue. I got thou side effects from the testosterone implant with no noticable positive benefits eg aggression and excess sex desire to a very unsuitable level (I felt like raping someone).

    I also have very very low vitamin D levels and take supplements for that but as far as I know Ive never got my Vitamin D into the normal range. Strangely my D2 has always been mid normal range with just the D3 level being very very abnormally low. (makes me wonder where my active D is going to.. or maybe I arent converting D2 to D3 properly). My D3 levels fell lower when I was taking D3 supplements at the normal recommended supplementation dose.

    I also have an imbalance of the hormones LH and FSH. Ive never had other hormones tested eg growth hormone but I suspect with all the hormones I got screwed up, there is likely to be others.

    Maybe if I addressed ALL the hormones levels at once rather trying to address one thing at a time I would of had better luck with it? I really do need a good endocrinologist but havent got one, that is on my list of specialists to see some time in future.
  10. taniaaust1

    taniaaust1 Senior Member

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    Bad Dreams and fears... jail ** warning may be disturbing for some to read**

    Last night I dreamed once again that Im in jail, something which I think is due to both my actual jail experience with choosing to go there and possibly jail dream due to having ME and experiences there too..

    In real life, I was in jail for a month as I'd choosen to go to jail instead of bail while court case was going on..for something I hadnt even ended up doing.. Id suddenly come back into normal mind frame before I lit the lighter/match.. Im now even unaware of what I had in my hand, (due to the unexpected presence of another in that location which like shocked me back to reality and normal thinking state). Had that other not unexpectively been there, I'd now be dead.

    On seeking psych help for almost doing that to myself, those in the mental health place I'd gone to to seek help, called the police and I got put on an attempted arson charge for a near suicide attempt which would of involved fire.. and amazingly not even given counselling for what I almost did. I had petrol and was going to suicide by burning myself up. *No one worry about this..Im currently emotionally great and my mental health stabilised once I found out my diet was greatly impacting my mood swings. (sugar and insulin issues can lead to mood swings, in my case severe ones).

    I'd choose "jail" so I'd get looked after cause at the time I so needed to have someone bringing my food etc but that jail dream which happens (thou I never got jail dreams before I went to actual jail), may also be due to ME/CFS symbolism. Having ME is in a way often just like being in jail. Our dreams are often our subconscious, trying to sort out all the crap we go throu.

    In my dream thou, all my jail fears were coming up... fear of the other prisioners due to a fear of being "not understood". In real life many times Ive been misunderstood as far as ME goes which then has lead to bad impacts on me due to what others have done due to misunderstanding the illness. I was often misunderstood when I was in school too due to having the Aspergers (to the point I was bashed there). So anyway.. I now have a fear of "being misunderstood" and I had a fear while in jail that I'd be taken wrong in a bad way there too. So here I are after that jail experience, having bad dreams still of being in jail.

    In reality thou, my attempt at the time to get my basic needs cared for (to just be able to eat normally and not be left having to go without food due to the ME), I was kept in the isolation ward of the jail in isolation cell (locked in a single cell to which one couldnt see outside it for a month) which made me think of when I'd been long term bedbound and stuck in bed for 9mths. It was a torment to my past ME history, like being there all over again but just in another location. The whole situation made my mental state worst and I think I went half crazy while in jail (hence then had to spend the whole month in isolation.. the only time one gets to see even a guard is only when they bring one food and pass a try throu a hole in the door to you).

    They usually missed taking me to the showers (for the first two or three weeks there.. i was only getting a shower every 2-3 days so situation was much like how it was at home anyway but I still hated that). If I'd been a smoker I would of got my social contact with guards, cause those who smoked got several times during the day in which the guards would take them one and talk to them while they smoked.

    I ended up stressing when they did take me to shower thou I was desperate to have one.. but I'd collapsed on the floor while walking to the shower with guards and then been abused (had head stood on so hard I got bad pain from it cause I didnt get up.. I didnt get up cause I was too faint to get back up and about to pass out again). They didnt believe I was physically sick. I got picked up and basically thrown back into the cell for the collapse.

    The other prisoners on very rare occassions they did come in contact with me, fortunately were nice to me. The more psycho the prisioner the nicer they seemed to treat me.. there was like a mutual understanding between us about both our mental health states. I met a couple of them who certainly should of been in a mental health hospital rather then a jail anyone could see they had severe mental health issue.

    I met one who had offical assessments say she had the mind of an 8 year old and who was also diagnosed with schizophrenia.. she was completely still a child in her actions and one could see that. She was in jail for biting her carer (she wasnt awaiting sentencing as far as i know but already been sentenced) and on talking to her.. one could see she had no realisation at all that what she'd done wasnt right. She got brought in after being discharged from a mental health place where she'd been staying, while still in a halluncinative state (thought giant mossies were attacking her and was terrified of what she was seeing).

    Then there was the one in the isolation cell next to me had a severe personality disorder (borderline personality) along with a diagoses of schizophrenia and was having up to 15 grand mal seizures a day... they had her alone in isolation cell and I could hear every time she went into a seizure. Her seizures got worst and worst in the month I was there and she was just left in that cell.. as far as I know no medical attention was sought for her worsening state.

    Her severe mood swings were so obvious and she could suddenly go off at nothing. She reminded me of Dr Jeckle and Mr Hyde, she was a nice person but I certainly wouldnt have liked to share a cell with her. While in jail, she smashed a mirror so ended up getting hold of a piece of glass and cut her own throat open... so hence was in isolation and had been there a while. yeah sure that is going to help her mental state!!!

    Its criminal that those who should be in the health system often end up instead in jail instead..

    Our health systems are soo screwed up when sick ones are ending up in jail due to their illnesses.

    Then the case of what obviously was a judges dislike of blacks which had got her there. A very soft gentle aboriginal woman who couldnt talk even one word of English who lived out bush (walkabout kind of camps), got picked up in outback somewhere for not wearing a seatbelt and was in jail for 3 days for it. Apparently this seat belt crime was commited a long time before she got picked up (it may of been years.. I heard what ws going on from guards discussing her outside her cell, even the guards were shocked she got jail). I cant imagine a white person that happening too, 3 days of jail for that. If she'd had a previous warning for it, she wouldnt have understood it.

    Anyway..back to me and what has happened to me in real life (not dream)... I was taken out (guard escort and in handcuffs) whenever I had to go back to court, I went to court 3 times in that month I was in jail, my case kept on going back to court but I kept on refusing to be bailed out as I NEEDED to be being looked after. That final time I accepted bail and hence got to leave jail.. I'd realised by then that jail had done me more harm then good... now I also had jail psych trauma.

    It wasnt just the unable to often get myself food etc which lead to me choosing to go to jail when I found myself in a situation in which that suddenly became an option, but I also knew my mental state was still very bad and swinging all over the place and hence feared I'd kill myself if let out.. so me choosing to stay in jail was also protective for me.. it was I was darmed if I choose to leave that place and darmed if I didnt leave. All this just cause I needed home support and counselling and couldnt get it.

    There was benefits from being in jail which I needed as the health system wasnt meeting my needs both ME wise and mental health wise. I met others in the isolation area (we could hear each other throu the wall and would talk to each other laying on floor speaking throu grills) who shouldnt have been in there either.

    Anyway.. last night, another jail dream. Fear of prisioners again, fear of being bashed.. the hate of being in a place in which is only 4 walls about one to which one cant leave.

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

    *I nowdays do have psychologist counselling once every 6 weeks for all the abuse ive had due to the ME, no one except my psychologist realises Ive had psychological trauma due to how others have treated me. Many of us with ME are ending up needing counselling, due to the lack of understanding which goes on around our illnesses and the bad stuff we experience due to that lack of understanding of our illness being in fact not just a mental one. I have counselling due to being traumatised by doctors and others.

    My psychologist referal period thou ran out the other day. They rang saying they'd cancelled my appointment as I'd forgot to take a new referal in, I'd actually forgotten I'd had that appointment and thought I had another a home visit that same day with DisabilitySA person (he thou ended up not doing the visit).

    Right now Im in a situation again where I may not have a GP to get another referal from as my new GP said she wouldnt see me unless Im under care of a ME/CFS specialist and right now, since the one I was seeing just retired, Im between specialists again.
  11. taniaaust1

    taniaaust1 Senior Member

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    Update

    I stuffed up.

    I had my psychologist ring needing a new referal so ended up going to the new GP to see if she'd do it throu I do see psychologist due to having to cope with ME and that doctor didnt want to see me over ME stuff without a ME/CFS specialist.

    anyway the doctor turned out to be fine about doing that for me but I didnt know what kind of referal I needed so I ended up getting a doctors letter which was unacceptable in getting more psychologist visits as I didnt know it had to be part of a mental health plan. So now I have to go back (the GP is in a different town) and get another one as part of that plan. Its so frustrating esp since Im trying hard to keep my appointments down.
    ...

    Tomorrow I go and see a new ME/CFS specialist (the one it has taken 3 years to get into seeing.. Dr De Fante). Then the day after I have another home visit with the guy from DisabilitySA. I spent the day getting together things (my test results etc) to take to the new specialist.

    I had planned to get together a list of my current medications/supplements to take but really needed a break so that didnt get done (too much head work, thinking for me right now to get that together). I'll post that list here once I do get it together.

    I really didnt want 2 appointments in one week as that made me sick last time but I just cant fit my appointments in and I NEED that home help Im trying to get from DisabilitySA. (Ive had maggots in my kitchen twice this year already due to being unable to keep up with my dishes and having to wait till another visits and does them).

    SA CFS/ME society also has responded to my email over my queries over the issues Im having with DisabilitySA in getting home help due to the biased of me having ME... so Ive responded back answering their questions. Im happy they are looking into things apparently.

    Fingers crossed that things are going to sort out for me.

    On a down side.. I may be getting tolerance to the antihistamine Im taking for sleep and are considering increasing my dose or needing to add another med into my sleep mix.
  12. taniaaust1

    taniaaust1 Senior Member

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    Visit to the new specialist

    It went ok I guess umm (I hate being negative). There are some things I liked about the new specialist Dr Del Fante while also something I didnt like.... he said exercising would be part of his treatment for me. When I commented about that my ME is bad enough that just housework activities and doing the normal things in life were like a huge exercise to me and I cant even do all that.. he said that dont count, he means proper exercising.

    I also took in the stuff on the International ME consensus Doc and underlined the things I have to show I fit this new diagnoses but he kept on saying ME is the same as CFS and they are no different. This really bothered me as it seems he dont at all distinguish between the various subgroups of CFS including ME. It appears he must treat all his patients alike.

    When I tried to say I cant really go and add exerise into my current life as Im needing help to do the basics/necessarities.. he still said I must. I cant figure out how i'd add it into my pacing without cutting out more necessarities but there is nothing more I can cut back on.

    He said he's had patients just like me and has got them better cause they followed his program of exercise and other things (I havent heard what yet). When I tried to disagree about this going to help me as I have already tried it all in the past and it only makes me worst, he said he "knows best as he's got 1000s of CFS patients". (how can I argue with that one.. I know he's one of only a few CFS specialists in this state but crap.. Im really worried he's going to send me downhill).

    All I want from him is to treat my symptoms and not just leave me to rot one could say. Im not expecting experiemental treatments from him.. he's made it clear to me he dont do those in his visit.

    Another thing he said is that all CFS symptoms are also in depression. I was kind of shocked to be hearing that from one who is supposed to be the best specialist in this state. I myself have NEVER heard of one just with depression having all the symptoms I have including at times unconscious collapes.

    All I can do is hold on some hope that hopefully he will work on treating my ME symptoms and not get me to do anything which may send me back to my past long term bedridden state.

    He's told me to keep an activity/diet journal for 2 weeks.. so I'll put my posts on that here. Today was day one and I found it upsetting to realise just how little I do. Doing a 2 week journal is like putting the severity of my illness to much in my face. I like to convince myself Im better then I actually are.

    Me having to keep a record for him for a couple of weeks I do think is a good idea but its depressing to see. Another thing I did like which he did.. is he not only got me to take home psych forms to fill out to find out if I have anxiety or depression, but he also got me to fill in Canadian consensus Document criteria form to see how I met that. (Thou Im surprised thou that he still believes CFS and ME are the same thing).

    We couldnt discuss my meds/supplements due to me not taking a list in with me of what I take and of cause I couldnt remember. I'll do and take a list with me next time I see him in a couple of weeks time.
  13. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Tania, are red flag is going up when he mentions ME, cfs and depression all very similar. I think u need to sort your sleep and make a trip to bris to see a different cfs/me specialist who doesnt believe cfs and depression are similar???
    taniaaust1 likes this.
  14. taniaaust1

    taniaaust1 Senior Member

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    Day One of two week activity/food journal

    14th Feb

    2am
    Raising my Doxylamine Succinate (anti inflammatory for sleep) so took 10mg instead of the 7mg Ive been taking, along with 3g melatonin. This increased worked as good as the lower dose originally had and fell asleep at 3.50am.

    11.30am
    Woke up feeling good other then butt cheek and thigh soreness (like lactic acid buildup feel) which I've had for a couple of days. Im rating the soreness at about a 2 out of 10 thou its making me go "ouch" every time I sit down.

    I know I need to take care today as yesterday was appointment in city, so post exertional symptoms could come in today.. Im going to take it easy to try to stop or lessen those. Tomorrow I have another appointment so Im also trying to preemptive rest today to make sure I can manage the appointment tomorrow. (all part of good pacing).

    Stayed in bed till 12.30pm (sitting) watching a DVD till I felt fully awake then got up.

    12.30pm-3.30pm
    Sitting activities out of bed. Did some phone calls to a couple of family members also did some study into my family history (not online, going throu books).

    3.30pm PENE is starting to hit (after effect from yesterday). Extremely lethargic. Feeling to lethargic to cook. Ended up walking to kitchen to get a prepacked serving of cheese and crackers (7g carb). That is going to have to be my brunch.

    3.30pm-5.30pm
    sitting - played computer game
    standing activity 5mins (putting putty onto a book shelf to fix)
    sitting - played computer game
    standing activity 5mins (sanding the putty)

    5.30pm in bed laying watching a DVD for about 45mins.

    Then got very hungry so thou extemely lethargic still, got up to cook a piece of steak. I managed to eat half of it (in bed) before my jaw went weak and I was struggling then to chew it so had to stop eatting it. (fortunately Im usually okay with chewing and this only happens to me occassionally).

    So had to get of bed to try to get myself something else to eat which I didnt have use energy to chew. Tried to get myself a banana milkshake (half a banana with 1 cup milk). Due to being so lethargic thou, I dropped the glass onto the floor and hence end up didnt get any milk shake.

    Glass now everywhere and too lethargic to clean it up so left it over floor and went back to bed hungry but not up to doing anything about this. (this ending up with broken glass everywhere, happens to me a lot..this is probably the 3rd smashed in past 10 days).

    On a trip to loo noticed the toilet was quite dirty.. spent about 30 seconds cleaning it with a brush.
    Have gotten hot.. dizzy, eyes blurring. House is too hot and is affecting me.

    Layed in bed till 7.30pm (watching DVD)

    7.30pm-8.30pm
    Have gotten out of bed and now laying on lounge watching TV. Dizziness and my eyes have settled.

    8.30-9.30pm
    sitting- playing computer game. Legs/Butt no longer sore.
    Activity for approx 5mins- got up to put phone on changer and then successfully this time, made myself a the banana milk shake I'd tried to have earlier. Made the shake while carefully stepping around all the glass Im still not got energy for cleaning up.

    9.30pm-10.00pm
    sitting playing computer game

    10.00pm-11.00pm
    sitting on computer doing this post which I arent really feeling up to doing..pushing myself now. But it had to be done as its far easier for me to type daily diary for the specialist then write it all up by hand (my wrists wouldnt be able to handle that). Im now more worn out from typing this so going back to bed now.

    I really smell (covered in sweat so sticky too due to too hot house) and need a shower so trying to also gather enough energy up to do that. Better I do it tonight as tomorrow is going to be busy with the other appointment I didnt want to have but needed to have. A clean nightee on will be nice rather then the dirty one I've had on all day.

    Due to my lethargy today Ive had drink bottles near me all day.. to save me having to get up to get drinks as that would of worn me out more otherwise. Sadly.. no proper meal for me today, just not up to it. Ive hardly eatten.
  15. Valentijn

    Valentijn Activity Level: 3

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    My physiotherapist is having the same problem (yes, they're the ones having a malfunctioning thought process about exercise, not us). He thinks I should work in 15 minutes of daily exercising on a stationery bike, in 2-minute chunks if need be.

    My response: I'm already doing as much as I can. There are things I want to do that I can't do, like going to the supermarket with someone driving me there.

    His response: Going shopping is way too much. Doing little chunks of activity is better than doing none or doing too much.

    At that point I was too light-headed to think of a good response, especially since his statement was somewhat reasonable on the face of it. But when I see him next week, my response will be firmer: I've been keeping an activity diary with my ergotherapist and I'm already at the limits of what I can do without being exhausted. I can't pace any more carefully or efficiently than I already am. I have a long list of household chores I want to be able to do daily, weekly, or twice a week, and I can barely manage half of them. There's no way I'm going to give up taking baths or watering my plants so that I can sit on a bike and peddle nowhere. I have limited energy, and I'm going to use it doing things that serve a purpose.

    Your doctor is not understanding PEM/PENE. Don't let him talk you into doing something that will make you suffer, even for the purpose of proving to him (and yourself) how wrong he is.
  16. taniaaust1

    taniaaust1 Senior Member

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    Thanks for the post.

    Sorry to hear you are having the same issue, this issue is a very common one, even among the experts. I think we all know exercise IS good IF we can do it, they really need to become more aware that EVERYTHING we do is a form of exercise to a degree or another. Just getting up and walking to the loo is often hard exercise for us.

    It frustrates me sooo much that I have this exercise thing said to me by nearly everyone Ive ever seen, esp when its all already been tried and I know how to pace well. I think anyone who's had this illness long term has normally already learnt all this stuff.

    I think they also need to learn that we need to be using our energy which is like gold to us, for the valuable life things. Thou shopping is harder, it is often a good thing for our emotional health for us to get out of the house even if its for something which needs to be done. I know that is why I like going shopping.. its the only time I get to go out (other then appointments). A chance for me to see people but not have to be burning energy chatting to them.

    I wish I could shake some of those professions and yell at them "be practical" and "We still need to be able to live some kind of life so help us do that not waste our energy."
  17. taniaaust1

    taniaaust1 Senior Member

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    Another home visit by DisablitySA

    Today my anger at the situation came out. He was supposed to be at my home to give me a update on how my application for home help is going but seemed to keep turning the questions to about me and how I am doing.. **rolling my eyes** how many times do i have to tell them my issues, over and over and over... Im sure they have just tried to dealay things. What do they believe? that things are going to just go and change for me after Ive been ill for so long?

    I told him today that his appointments just knock my around and take up so much of my time (resting the day before, resting the day after too), I dont see why I cant be regularly informed on what is going on about getting home help for me, cant be done by email or letters as that would be better for my health. His unnecessarily appointments with me telling me that nothing is happening yet, have sometimes taken the place of where I would of had a medical appointment had I not have had him home visiting.

    Today.. he suddenly told me he's putting in a submission for home help for me as he finally feels more comfortable about doing so after talking to one of the specialists I saw about CFS/ME. It really really annoyed me hearing that as I thought that submission had gone in last year!!!! so to find out it hadnt even gone in.. well I was darn angry.

    I ended up spat the dummy at it all.. said to the guy if I had MS and not ME/CFS my submission would of been put in ages ago. At least this guy is truthful and said yes that is so, if I had MS there wouldnt have been any issues. So I further then done a dummy spit about that discrimination which is going on in ME/CFS cases.

    I strongly suspect this DisablititySA guy which is dealing with me is actually a counsellor and not just someone who is dealing with my application. Today it was like he was trying to counsel me instead of just there to update me on the situation and what THEY are doing about my case. (That whole thing made me feel even more angry as I already have my own counsellor and dont need or want another one.. I just need the home help).

    I dont wish to answer any more questions from them on how Im going.. when Ive told them over and over how Im going and by the delay in my home help.. well its like they are ignoring me.

    So anyway.. they certainly got told today how angry I are at them. Talk is cheap and it dont say anything to me.. action does.

    I have no faith or trust in them till they act and till they do I arent going to believe any bullshit as I've heard it all before from orgs. (I actually said that to their guy). I also told the guy how Ive put in complaints and plan to put in more as the whole thing is unacceptable and discrimatory.. and he's going "please hold on and give us another 4 weeks to sort this out". After two previous rejections after being told they would do something, well I arent going to believe it or anything they say till I see it.

    ***grrr.. Ive got so much anger over it Im going to have to talk to my counsellor about it** she's great, she will probably encourage to keep putting in complaints if it makes me feel better.
  18. taniaaust1

    taniaaust1 Senior Member

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    day 2 of 2 week activity/diet journal

    I took my sleep meds/supplements half an hour earlier 1.30 am and that workedout okay.. I was asleep about 2.15am. I think Im slowly managing to move my sleep forwards :) , its such a slow process thou and I know my sleep can easily go back to how it was.
    ....

    11am woke up. Very very tired still so layed in bed still trying to sleep till I felt better around 11.30am and then got up.

    11.30am Sitting at table, trying to hydrate myself well and by 12.05pm I was feeling reasonable enough (actually was feeling quite good) to go and do some things. No symptoms at this point.. yesterdays rest day helped.

    12.05pm - 12.15pm Got dressed, done hair

    12.15pm-12.20pm house cleaning just picking up things

    12.20pm-12.30pm sitting, taking notes for this activity diary

    12.30pm-1.00pm house cleaning just picking up things

    1.00pm Feeling exhausted from the housework. Laying and drinking trying to get fluids up more

    1.05pm DisablitySA guy arrives for home visit. I continue laying on lounge for this appointment. He's here till about 2.00pm

    2.00pm-3.15pm laying resting and trying to boost my fluids up (doing that helps me to be more active and stops me from collapse)

    3.10pm-4.30pm Got taken out to go basic food shopping. library and get lunch. (I broke my low carb diet and ate 2 meat pies and a chicken wing.. I was hungry after missing meals yesterday).

    4.30pm - 5.25pm feeling very worn out so laying

    5.25pm-5.30pm 5 mins outside watering garden

    5.30pm-6.15pm Laying in bed reading

    6.15pm-6.20pm Made myself a milk shake with half a banana and milk

    6.20pm-6.30pm Sitting as just finished shake and suddenly fell asleep while sitting

    6.30pm-7.00pm sitting playing computer game (trying to wake up more)

    7.00pm-7.15pm Made myself dinner. Stir fry beef with veg (used mix frozen veg with extra brocolli and cauli added).

    7.15pm-7-30pm sitting watching TV

    7.30pm-8.00pm sitting eatting

    8.00pm-9.00pm sitting watching TV

    9.00pm-11.00pm played a computer game. Did get up to get a glass of milk during that time.

    11.00pm-12.20 sitting Writing out this journal.. also on phone. (I have a self rule to be off computer at midnight but its taken me longer then I thought to type this).

    Heading now to lay in bed and watch DVDs.. I'll be taking my sleeping stuff at 1.30am again.
    .......

    My boyfriend today on his visit, cleaned up my kitchen for me, he did my dishes, cleaned all the smashed glass up and washed my floor... all before the disablitySA guy arrived. (I managed to clean the rest of my house today except two other rooms which are still messy).
  19. Valentijn

    Valentijn Activity Level: 3

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    The ridiculous thing is that the doctors have it backwards: exercise is the substitute for real activity. It's what people do when they can't ride a bicycle to work because they live too far away, or can't mow the lawn because they don't have time, or all the other normal physical activities that their lifestyle can't accomodate.

    It makes absolutely no sense to cut out real activities from life in order to fit in artificial exercises, yet people in the medical field somehow are infected with the idea that artificial exercise is always beneficial, therefore it must somehow be superior to real activities.
    taniaaust1 likes this.
  20. Gavman

    Gavman Senior Member

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    I agree Valentijn.
    One thing most therapists agree on is that not many clients do their homework. Just let him have his opinion of exercise and if you have done stuff around the house that is like that exercise, then just say you did it. If he can help you in other ways, stick with him otherwise turf him Tania. :)

    The medical community in my opinion is f..ed. Having someone treat you while ignoring your words and your feelings is ridiculous.

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