People won't leave me alone to recover

[Guest guest]

Hi everyone,

I think the last time I wrote to you was around 4am after sitting awake all

night in agony.

As always this is the only place to turn to when feeling completely isolated

and misunderstood.

I have daily migraines since age 4, now age 32; longest migraine to date lasted

for 2 years non stop, which left me bedridden and unable to move, speak, eat,

pitch black silent room and pretty much no human contact apart from a 5 minute

visit from my Mam to check that I was still breathing each night while I lay in

my own urine and vomit.

Then developed ME/CFS which now had 12 years and leaves me just as disabled and

in agony as the migraines, then i found about a hole in my heart awaiting open

heart surgery, then I found out I had cervical cancer and had to have a

hysterectomy a few weeks later, that was around the time when I last mailed on

here ish a few months ago.

Because I've been in agony since 4 year old i'm expert at making light of

everything even when I feel like I'm going to die but I explain very clearly to

people when I have to for my own safety if they won't leave me be to rest and

recover from whatever activity i've done.

ME is a nightmare to live with purely because people don't and cannot understand

that when I'm ill i need to be left alone or i will never recover but the more

ill I get the more they bother me (because I'm ill) and the more they bother me

the more ill I get as I then have to recover from their 'help'

It's such a horrible situation to be in sometimes, people don't realise that

when I let them help me, i'm actually doing them the favour because I actually

need to be left alone, but don't want to be saying that to them all the time as

it hurts them so I have to sometimes allow them to help and then find the time

to recover from that sometime after that.

I don't 'want' to be sitting here alone staring at a wall for days, I 'have' to

sit here alone staring at a wall for days because its the quickest way to get

better again, if only for a short time before the next relapse.

I'm in the process of splitting up with my boyfriend of one year because of it.

My landlord bothers me all the time, trying to help, my neighbours in my

buulding bother me all the time because i'm the one who usually sorts out

everyone's problems (when i'm well)

My boyfriend is great some of the time, but after a year of seeing me suffering

and seeing exactly what causes it, he still doesn't understand and if he doesn't

no one ever will.

I spent 2 weeks working round the clock for a uni deadline that I study at home

for, that alone would make me ill, I got the work done and did surprisingly well

considering i was near comatose while doing it, then, I spent the whole weekend

at my boyfriends house, that also alone usually makes me really ill, then on the

saturday night I went to his friends 40th birthday party, that on its own would

make me really really ill. I had sex with my boyfriend which caused complete

paralysis for 2 hours afterwards, all I could do was blink for hours, i had sex

with him again on the monday while I was already in agony from head to foot. I

got home monday night, I still couldn't relax as I was in hospital all day

tuesday for my final cervical cancer tests to hopefully get the all all clear,

and spent the rest of the day with my boyfriend until he seen i was collspasing

and then went back home.

My Mam visited on Wednesday, by thursday I'm in a near coma like state, drooling

because I don't even have the strength to swallow and just enough strength to

breathe in and out.

By the Friday I'm just as bad as my relapse starts to kick in. By this point my

boyfriend is hinting to come to my house as its been a whole 2 days since he saw

me, he knows I've been desperate to rest for weeks and this is my first chance

ive got. I don't invite him over and tell him I need to rest. He then ends up

doing his usual thing of causing an arguement out of nothing so that he has to

come to my house anyway 'to sort things out' so he still gets to see me when he

knows i need to rest.

I sent two texts messages to him making it extremely clear that I have to

rest!!! to make sure he didn't just turn up at my house. Lo and behold, 15

minutes later he turns up at my house to 'sort things out'

I completely snapped. I used up all my energy to crawl to the door to let him

in and I told him to leave. He was still trying to argue with me as I'm crawling

back to bed and I literally had to use raw rage as energy as it was all I had

left.

I exploded and literally just screamed my head off, and told him to fu*k off, i

had to do this a few times but when he was still going on at me, i ended up

punching the bed i'd crawled to with my fists, screaming 'just let me f*c'king

rest!!!!!! I was absolutely desperate.

I was so beyond exhaustion that I had to just get him out of my house

immediately, before I ended up in hospital or dead.

So now its going to take me even longer to recover than if I'd just been allowed

to rest for a few days until I was better. I ask for absolutely nothing apart

from being allowed to rest at times when I absolutely have to and no one will

allow me to do that.

I will have to go back to those years of complete isolation the way it used to

be and it shouldn't have to be like this. I'm going to have to go back to having

absolutely no one in my life because its the only way i can be allowed to rest

when I need to.

I haven't heard from the boyfriend since Friday, he apologized for losing his

temper. But we've been here so many times before, i don't have to strength to

keep going over the same problem again and again.

I just need some peace from everyone, I live alone and can't get any rest in my

own home, no one will allow me to and I feel like i'm losing my mind.

I'm so sorry for having a rant. I just needed to vent.

love

xxxx

[Guest guest]

, you need to ditch that boyfriend. Change your

phone number, have new very sturdy locks put on your

door.

If he comes over just call the police, and have him

arrested.

I don't care how healthy your body is, no one needs

a boyfriend like him.

Kaylene