PEM from HOME SUPPORT

A little update from the UK.

On Monday I had my first taste of home support. I went from bed bound/supine from an hour or maybe 50 minutes on my feet. This has resulted in PEM which I expected but didn't quite expect the severity as most of the time my PEM comes from making medical appointments. Three to four hours after activity I crashed with neurological symptoms, pain and fatigue. Interestingly sleep paralysis in the first hour of sleep that had me fighting to wake up but I was so exhausted, I was awake and then back to sleep within seconds.
After two or three weeks of introductions to support workers, I am feeling devastated by the result and tomorrow I am expected to again be active for an hour decluttering/trying to get my home into a maintainable state.
I can't criticise the support workers themselves as they are uninformed general workers, but more the UK system as a whole is at fault but we all know that. I am just allowing a peek into my own personal experience as a CFS/ME/MCS/FIBRO sufferer.
Because my activity level is poor I was sweating within minutes and turned the heating off. We started in one room and after maybe ten minutes I was squatting, casually i was told "Come on then" lets get up and do this. I had already had to (uncomfortably) voice about perfume just on people being present in my house wearing it. So when the kitchen spray was being applied liberally it was far worse than perfume and I had exited the room stating it was affecting me. The support worker did seem to take this on board and thinned it out with water but I was already struggling anyway the whole thing was feeling distressing due to physical symptoms and the lack of understanding. I was asked did I do anything at the weekend, had I plans for the week???! If I had the energy to even make plans or carry them out then my home would not be in this state right! I have asked and they have never worked with a CFS sufferer until now. On taking the trash out i nearly fell over from a sudden pull of dizziness/vertigo and was asked was i okay. I replied I was but this was far from the truth. I don't want sympathy I want understanding and real help suited to my illness.
When she left, I broke down and prayed to God because right now, I have no other solution, and no one to turn to except my friends here at Phoenix. If I cant comply with this home care, then I am not sure what options are. But at this point I will have to enquire and seek advice. Because I am alone, no family etc, there is no one there to step forth and fight for me where I try my best to stay polite and comply. I don't know how other people in the UK have managed who have been alone with this illness. I know how it is for me at the moment and there are many fears coming with it. I don't want to lose my independence. But really do I have any, anymore?

Comments

Some help! This is not right that you should feel even more ill after home support has been at your place. I'm sorry.
 
I am sorry to hear that the workers had no idea of how to respond to your needs.

It's vital you communicate to the relevant supervisor or manager that workers must not wear any perfumes or use any strong cleaners or room sprays.

This is one problem that I share with you. Fortunately this is one area that my friends & family understand.

Secondly, they must understand your need to be quiet, still & rest. After all, that's why they are there - to do chores that you cannot.

Hope future visits are more helpful.
 
Sorry your having such a bad time.

I cant help with the main issues but I might be able to with the cleaning products issue - I recently purchased a small steam cleaner and provided they (the home support people) are the ones doing the scrubbing I can recommend them - simply because you dont need any other cleaning products - the steam does it all - apply steam and wipe and it's clean - the only exceptions i've found are seriously baked on stuff which needed a scrapper as well.

cookers, floors, walls, windows, even chip pans (hasnt been used in years lol), it manages to clean them all with no other products and a lot easier than it used to be using other products.

wave it over a shirt and it even irons it.

of course you'd have to persuade them to use it tho
 
To my understanding they are not there to help clean. they are there to enforce graded exercise, with cleaning as the chosen exercise. This is a deceptive form of CBT/GET. They are not home helpers - like everything involved with the biopsychosocial research, they take something, change it, but keep the same name: CBT, pacing, CFS, ME and now home help. Same name, different animal.
 
sorry sleepy.. but my post is going to sound harsh and probably make you cry, I dont know how I can put what needs to be said in a gentle way. So please excuse its harshness.

Thinning something you are reacting to with water WILL NOT work... and you will just became more sensitive to it and react to it in lesser and lesser quantities. This cleaning situation one is one easily solable as Ive previously suggested.. just buy (or get someone else to buy or mail order them), natural products you do not or are far less likely to react to and have them already there and tell the workers to use those. They should have no issues in doing so if you have products there for them to use and want them to use.

On taking the trash out i nearly fell over from a sudden pull of dizziness/vertigo and was asked was i okay. I replied I was but this was far from the truth.
By telling them you are okay, they cant be expected to understand that you arent okay. You arent meaning to do so but are misleading the workers into thinking you are much weller and able then you are. You do need to be truthful about how sick you are if you have any hope of getting them to understand. How will they possibly come to understand otherwise???

(this illness is said to cause personality changes in us... but I personally think it is it teaches one survival skills. You do NEED to speak out and be truthful with those who are trying to work with you, otherwise things will certainly be bad on your health and make it worst). Somehow, you need to find that strength within yourself to "be real" and speak up.

If I cant comply with this home care
Sadly CFS/ME complies with no one and thinking you can comply will lead to worst health and more disability. If they are making you sicker, they need to be told and see that. When you almost fall over.. you NEED to tell them you are terribly dizzy and about to collapse and do need to sit down before you fall down.

please sleepy, dont make light of things to them as you will further damage your health and you are at a health level is which doing so will be disasterous for you. Please think about what Ive said. They could cause you to loose what independance you have now, you do need to try to do things differently even if it means you cant be the person you usually are for now.

maybe some nightly affirmations of "I CAN and WILL SPEAK truthfully OUT for myself, I ARE IMPORTANT" could help, visualise yourself as being a strong person, able to make yourself heard).

best wishes
tania
**hugz**
 
alex3619;bt4467 said:
To my understanding they are not there to help clean. they are there to enforce graded exercise, with cleaning as the chosen exercise. This is a deceptive form of CBT/GET. They are not home helpers - like everything involved with the biopsychosocial research, they take something, change it, but keep the same name: CBT, pacing, CFS, ME and now home help. Same name, different animal.
Alex.. thanks greatly for saying that, I hadnt wanted to say that myself.

Your thought is what Ive thought all along about Sleepy's "home help" (it made more sense to me of why those home helpers had so many sessions with Sleepy even before the home help started.. they could be working, linked with therapists eg psychs. The amount of get togethers before their help even started.. well i thought was weird).

I myself worked for an agency and worked as a cleaner and for the elderly.. (along the lines of what Sleepy is having done, I'd house clean). I wasnt even brought in to meet my clients first (they'd all been previously accessed by agency throu paperwork being sent in, doctor or refered etc). I was "on the job" and at work doing the cleaning on the very first meeting of them. I'd show up after arranging a suitable time with them, introduce myself and immediately start the cleaning. My clients were NEVER expected to help.

Sleepys situation all sounds weird to me and from the start Ive thought possible form of CBT/GET.
 
Your in a tough predicament, you need assistance but at the same time the only assistance available is not properly trained in working with ME patients regardless of what they think.

Is there anyway you can have your doctor write a note to them in regard to your concerns and how to help you in an appropriate manner?
 
Thanks all for support. I believe this http://www.reverse-therapy.com/reverse-therapy/ is along the lines of the method that is being used as I challenged this whole set up yesterday; Alex and Tania you are spot on and Michael also my ooptions are very limited and I was told if i dropped out funding would be hardeer to get in the future also graded and reverse were the theme and I am so damn angry that even in describing PEM which is still hovering it is only seen as deconditioing and i think well i think i am seen as a nutcase but really I know who the crazy people are!
 
sleepy237;bt4476 said:
Thanks all for support. I believe this http://www.reverse-therapy.com/reverse-therapy/ is along the lines of the method that is being used as I challenged this whole set up yesterday; Alex and Tania you are spot on and Michael also my ooptions are very limited and I was told if i dropped out funding would be hardeer to get in the future also graded and reverse were the theme and I am so damn angry that even in describing PEM which is still hovering it is only seen as deconditioing and i think well i think i am seen as a nutcase but really I know who the crazy people are!
I just checked out that Reverse Therapy link. Wow.. these doctors are really GODS. :Retro tongue:

"reverse symptoms - and then eliminate them for good.
We can work with any problem in which you are experiencing a symptom of some kind, such as: fatigue, pain, nausea, dizziness, headaches, irritable bowel, stomach ulcer, sleeplessness, agitation. high blood pressure, panic, alcohol/drug abuse, trauma, eczema, psoriasis, sexual problems, early stage cancer "

Wow. ..they can even reverse symptoms of cancer and take them away for good by the info there from that doctor!!! :rolleyes: it dont surprise me to think they can also just fix us then, they are loonies!!

I really wonder how they can get away with such crap.
 
So sorry for your PEM and the lack of understaning from the support workers, but you do have to stop being so polite and when they ask if you are ok...say NO I'm dizzy and have vertigo and my heart is racing I NEED to take a break.

You are too kind hearted and if you don't tell them what is happening to you they probobly will not stop pushing you. My guess is they don't even know what CFS/ME is??

Hun please take it easy with the workers today and if you can't do something try to educate them if you even have the energy for that :)

Also the steamer Wonko mentioned sounds like a great idea and Dr. Bronner's makes a liquid soap that can be diluted with water for cleaning almost anything including yourself.

I also agree with Alex it sounds as if they are there to force you to do it instead of being of assistance :(

Hope Love Light
 
Sleepy237

My heart goes out to you. Might you try seeing this as a process that could take three-six months to work? Imagine (in a perfect world) that each time they come you could iron one important thing for them to get right to your benifit and re-inforce it with a thank you? Imagine six months from now they could actually be of help. Leave sticky notes ahead of time. I wish you the best.
 
I just had an idea that's sure to produce a stunned silence at the other end of the phone: tell them you'll gladly comply with GET if they will put you through Stevens' Protocol and comply with its recommendations.
 

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