unfortunately, because I'm technically still married and fall under my husband's income as his dependent, I don't qualify for most social services. (I keep calling different services and get the same answer.) Same with trying to get legal help for a separation agreement/divorce - I don't qualify for legal aid, but I can't access my husband's income to pay for legal help.
Can you get a social worker or another who may be able to pull some strings or know of other options you may never otherwise find out? I think we get paid less attention too if we are advocating for ourself.. people don't believe how ill we are.
And I second the absolutely useless home health services. Right now, I've got 3 people a week coming in, but no one who can help me to appointments, shower, pick up meds... Instead I've got a p/t who tells me to "keep walking" (duh), and a psych nurse who takes my vitals and asks if I have any self harm/suicidal thoughts. Every.Week. I feel like they're stealing the energy I have, but that if I don't go along with it, I'm being a non-compliant patient.
That sounds truly terrible and something you don't need, that excess stimuli would make me very sick. Can u ask for another p/t on the grounds your current obviously don't know a thing about ME/CFS or send some good info to her heads on ME/CFS pointing out this is unsuitable?
I am considering a voluntary admittance to a mental hospital, but I'm afraid my physical state will decline and I'll be treated badly/with suspicion for psychosomatic illness. I just want to sleep for a few weeks without being woken up by a screaming child, an asthma attack, or endless questions. A mental hospital seems to just be trading one bad situation for another. I don't know. :-\
Mental hospitals are one of the worst places for ME/CFS people. I had both involuntary and voluntary admissions over the years to mental health wards due to becoming suicidial or suicide attempts and I'd put the odds at 90% that you will be made worst.
They even threatened me with and was going to drag me out of bed early each morning when I had severe insomnia and a reversed sleep cycle and wasn't getting to sleep til 5.30am ..they were expecting up at the tables with the rest of the patients awaiting for breakfast at something like 7am... I was extremely suicidal at the time so should of been there but had to discharge myself due to all this.
They also put me right by the recreation room and the nurses station where I was exposed to noise night and day (TV and all the other patients talking during day) when I had severe noise intollerence. I could get no rest at all there. If I had stayed there, I would of ended up fully bedbound all the time again as without rest, I decline fast.
..........
I choose to go to jail instead at one point for a rest (refused to accept bail conditions for something I didnt even do while it was going throu court).and currently are seriously thinking of doing that again. For myself I found it was a far better option then a mental health ward. Besides Im since having issues with a doctor not believing Im suicidal and who accused me of attention seeking (he said ME/CFS was in my head and not the cause of my symptoms) so I doubt if I'd get readmitted in a mental place again no matter how depressed I get over my situation.
When I spent nearly a month in jail, they kept me in an isolation room on suicide watch. It was VERY peaceful in that room though the complete isolation made me start to feel like I was going to go crazy just before I decided I'd accept the bail conditions so to get out.
* Guards didn't treat me nice in jail, I was physically abused by one there, a guard stepped on my head trying to make me get up after I collapsed and couldn't... but the other prisoners, they treated me nice (I had limited contact with them but did at times)... and the ones I had contact with eg in van on way to courts or waiting to see the doctor or wating somewhere else in the jail for something where other prisions were waiting too.. they were all extremely nice to me and obviously didn't think I should of been there.
(Even the couple of looney..obviously mental health issues, violent ones there eg in my isolation ward cause they'd hurt others were very nice to me and actually sympathetic towards me. It was like they could see something and that I was quite ill where the guards couldn't. It was like I got more sympathy there with the prisoners then I often get in real life! The whole thing was ironic that criminals treated me better).
Its crazy the options we end up needing to seriously consider due to not having options we are needing.
