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Topic: WORKING WITH CH(UK). (Read 552 times) |
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southwalessunshine
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WORKING WITH CH(UK).
« on: Jul 10th, 2007, 6:15am » |
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Hi all,
I found this site yesterday and have been very excited by it. I t's made me happy in that i don't feel so alone with these damn headaches, but it's been making me think very seriously about my future. I am a single mother on state benefits. I do have a very supportive partner but we've only been together for 9 months and do not live together.
I have 3 kids aged 14, 12 and 5. When I have mild attacks my oldest kids have to help out a lot more and look after my youngest until I recover or my partner can finish work and come over. When I get the really bad attacks the same happens but I'm no good to anyone. i stay in my room so my kids can't see me and the oldest 2 look after my youngest, making him food, putting him to bed etc again until my partner can get here. This has been going on for such a long time, since before I met my partner, so the kids used to have to deal with things til I could rejoin them which could sometimes be at least 24 hrs! Sometimes missing school. I don't have any family to help out either. It's getting to the point where my partner has to leave work early to take my kids on!
Now my son is 5 he has started full time school and I've been looking for work again. i always worked (running bars) until I had my youingest but wanted to change career to fit in with my kids as soon as he was at school. However since reading this site yesterday, I feel like I've got to face up to reality. My attacks are happening every 3 weeks or so! If it's mild I'm sick for approx 5 days, but even if I dragged myself to work, I'd be no good as my mind wouldn't be where it needs to be. If I get a bad attack i couldn't give my employers a time I would return because it could be the next day or a few days, it could jump on me mid shift or overnight. The bad ones usually wake me around 5 am though. As an ex employer myself I know i wouldn't employ me! However if I apply for a job and conceal my condition I would shoot myself in the foot a few weeks later when the headaches start again. I didn't realise you had to tell them when you apply for insurance so I imagine you would need to for employment? But there's no getting away from it, it would show a pattern and I would be sick alot of the time, who would employ me? So should I think realistically and bin the idea of conventional lifestyle of getting back out to work and try pastures new? Not sure what they would be just yet though. My partner told me last night that seeing how I suffer, he personally thinks of it as a disability. That scares me but has touched a nerve! He is a manager in the NHS and said he wouldn't knowingly employ me either because of the amount of time I would take off. So what should I do? Could i be classed with disability? If so, how would I get info on this and what would it mean for me and my kids. I desperately want to work but if I can't, what else is out there for me?
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keep your face to the sunshine and you will never see the shadow.
Alone we can do so little, together we can do so much.
Walking with a friend in the dark is better than walking alone in the light.
Helen keller
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TxBasslady
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Re: WORKING WITH CH(UK).
« Reply #1 on: Jul 10th, 2007, 6:30am » |
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There are many here on this site who are chronic CH sufferers. They suffer thru many hits every day and night, and still hold a job.
CH affects each of us differently. Most important thing is not to let CH rule your life...never give in. If you give CH an inch, it'll take a mile.
Jean
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How lucky I am... to have known someone who was so hard to say goodbye too.
Take a kid fishin
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southwalessunshine
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Re: WORKING WITH CH(UK).
« Reply #2 on: Jul 10th, 2007, 6:40am » |
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I would be very interested to talk to some of them that hold down a job as a chronic sufferer. Any tips on how to cope with the responsibilities of work when you're being pounded evry hour for up to 5 days every 3 weeks would be greatly appreciated. i'm sorry if i'm coming across as disillusioned but i'm really struggling with how to go about getting work. i don't want CH to rule my life but at the mo it's getting the better of me.
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keep your face to the sunshine and you will never see the shadow.
Alone we can do so little, together we can do so much.
Walking with a friend in the dark is better than walking alone in the light.
Helen keller
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TxBasslady
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Bass fishin' is a h00t It's the catchin' that sux
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Re: WORKING WITH CH(UK).
« Reply #3 on: Jul 10th, 2007, 7:15am » |
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on Jul 10th, 2007, 6:40am, southwalessunshine wrote:| I would be very interested to talk to some of them that hold down a job as a chronic sufferer. Any tips on how to cope with the responsibilities of work when you're being pounded evry hour for up to 5 days every 3 weeks would be greatly appreciated. i'm sorry if i'm coming across as disillusioned but i'm really struggling with how to go about getting work. i don't want CH to rule my life but at the mo it's getting the better of me. |
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The good thing about this site is the great support you'll find.
We've all been where you are....therefore we understand what you're feeling. No need to apologize for feeling disillusioned.
There's tons of information here....lots of things to read and absorb. There's meds available to help with the CH. You didn't mention in your post if you currently take any meds.
I'm episodic...have no cycle, just get random hits. I use 02 and have had great success with it.
Hopefully a few of the chronic sufferers will come along and give you some tips and info as to how they handle life, work and CH.
Jean
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How lucky I am... to have known someone who was so hard to say goodbye too.
Take a kid fishin
www.takemefishin.org
I adopted a Vietnam POW/MIA from El Paso, Texas!
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southwalessunshine
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Re: WORKING WITH CH(UK).
« Reply #4 on: Jul 10th, 2007, 7:38am » |
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Thanx Jean,
I've suffered for about 14 yrs.I've recently seen the consultant at the hospital headache clinic and he took me off the amiltriptaline and right now i don't have any preventative meds at all, which is weird and a bit worrying. he said my only optiona re beta blockers which I can't take due to asthma, and anti epilepsy drugs which i'm very unsure of. has anyone here ever tried them out?
I take sumatriptan tablets for my milder attacks with an anti inflammatory but it's touch and go whether that works. When the really nasty attacks occur, usually on about day 3-5 of the mild ones, I self inject with sumatriptan. i've only recently been given this and have self injected once. It saeemed to work but I won't know for sure til i get a few more attaclks under my belt. And that is all i'm taking. i was ok with that but upset i had been told I'd come to the end of the line, until I fpound this site! I am now buzzing with a mix of excitement and confusion and a little anger that i've been told this info by a doc and it seems he was wrong! O2 was never even suggested, I've never been told to go to ER if I couldn't cope etc. I'm a little confused as to where to start with all this info i've suddenly found and how to get my doc to take it all seriously and get at least the O2 successfully through my doc. I'm back to dealing with my GP now as the hospital saw me, then discharged me on the spot! No follow up apt, no nothing!
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keep your face to the sunshine and you will never see the shadow.
Alone we can do so little, together we can do so much.
Walking with a friend in the dark is better than walking alone in the light.
Helen keller
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andrewjb
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Re: WORKING WITH CH(UK).
« Reply #5 on: Jul 10th, 2007, 9:02am » |
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 . one of the outstanding characteristic of clusterheadaches, is that what relevies you, may have no effect on another. you have, in my opinion found the best place to start helping yourself, read, read and read some more. others, with more understanding will be along soon, iam sure. andrew. ps. <http://www.ouchuk.org/html/< .
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E-Double
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Re: WORKING WITH CH(UK).
« Reply #6 on: Jul 10th, 2007, 9:29am » |
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Hi sunshine,
Like Jean said, there are many here who work with chronic CH that actually do not get breaks or if they do it is just low cycle which means 1 or 2 attacks per day which then may resume to a high cycle of which they are having 5-6 sometimes more attacks.
I am one of the above mentioned. I've been in cycle since March 2004 having only had 2 short breaks of minimal activity; once in November 2004 and sometime near the beginning of 2006. It's all good....
I work full-time having only missed 2 days (last week) because I went to the hospital for an inpatient treatment in an attempt to get me some rest because the lack of sleep finally caught up with me.
I had a 3 day repreive so I am well rested
I had gone the past year+ without taking preventative medication and using only oxygen for 99% of my attacks and was and still am extremely successful with my career.
It is not the pain, it is how you cope with the potential anxiety and/or depression that can develop from it.
Good luck and do what's best for you and your family.
The only thing I can offer is hugs, support and a positive attitude (at least 90% of the time  )
Eric
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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E-Double
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Re: WORKING WITH CH(UK).
« Reply #7 on: Jul 10th, 2007, 9:33am » |
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oh yeah.........I can offer one more thing....Information
This is a great resource to know like the back of your hand...print it out and give it to the doc
http://www.brightok.net/~mnjday/chtherapy.pdf
It will present the appropriate treatments that you should seek and your doctor should know!!!
If you want an abortive with the least amount of side-effects O2 should not only be requested but demanded from your doctor!!!
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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southwalessunshine
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Posts: 121
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Re: WORKING WITH CH(UK).
« Reply #8 on: Jul 10th, 2007, 2:23pm » |
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I will go see my doc tomorrow and demand O2. i just guess I'm annoyed that this has never been suggested to me after 14 yrs of Ch! Oh well, no poijt dwelling, let's see what happens. Will let you know once I'm back. thanks for all your help x
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keep your face to the sunshine and you will never see the shadow.
Alone we can do so little, together we can do so much.
Walking with a friend in the dark is better than walking alone in the light.
Helen keller
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horsegirl
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Cluster Headaches
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Re: WORKING WITH CH(UK).
« Reply #9 on: Jul 11th, 2007, 12:12am » |
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i feel like such a baby here with all these chronic sufferes that hold a job down with out much drama it seems, i had only one child and an alcohalic husband who partied more then he worked and worked more then he came home , i worked in nursing homes , and even with all them nurses ,none of them even heard about clusters,they treated me like shit when i complained of a headach or god forbid had to leave or go lay on a bathroom floor in a residents room. I have to say yes i have held a full time job sense I was 16, from c.n.a to bartending ,costruction, horse ranches,hog confinments, etc... Im 44 now,the stress was unreal with the headaches depending where i worked, If peoples lives depend on me , its to much. If the hogs can wait to eat in a few hrs, much easier. do i think a person should get disability for these ha absalutly! can we? doubtful .most important is the kids, to be there for them in everyway. It sounds like you need to get on some meds maybe, I take 120 mlg of verapimil 3 times a day , o2 , if ha breaks through ,maxalt desolving tabs if that don't work , and predisone taper during the peak of my cycle, are you chronic? understand your fears about working, don't put to much on your plate,pf wishes
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cyberone
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Re: WORKING WITH CH(UK).
« Reply #10 on: Jul 11th, 2007, 2:13pm » |
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i live in japan...the place where you work no matter what...
im a teacher...i cant leave my classes...often i get hit whin im teaching really young kids...i cant leave them...
last year i took three months off work...i was lucky that i was really good friends with my boss/area manager..
then he left...
for the next few months....(i get headaches at least a few times a week when they are not bad) it was hell...the main reason was because i hadn't told people what was going on...
when i realized i tried to tell everyone i could at work....
they don't really understand....but they try so i love them..
some students have seen me many times with a headache...I've been crying in front of them and stuff...but at the moment i just keep going on....
a headache at home is bad...like really bad...alone, bored...
but at work it is usually better since they all know what is going on...even my students...
this year I'm going to hold out as long as i can before it gets so bad i cant work (which feels like now)..
the people i work with understand how bad it is for me...so i suppose I'm lucky....
i guess you have the job of educating the people around you...be it a doctor or workmate or friend or employer...
thats just my story...
cheers...
CYB
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southwalessunshine
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Re: WORKING WITH CH(UK).
« Reply #11 on: Jul 12th, 2007, 6:06pm » |
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Wow cyberone! that's one tough break! Just don't do yourself a damage by pushing yourself too hard!
Thanx for sharing your story though x
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keep your face to the sunshine and you will never see the shadow.
Alone we can do so little, together we can do so much.
Walking with a friend in the dark is better than walking alone in the light.
Helen keller
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southwalessunshine
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Re: WORKING WITH CH(UK).
« Reply #12 on: Jul 22nd, 2007, 10:40am » |
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Well I found out that in the uk at least we can apply for disability allowance, whether you work or not so I'm gonna give it a go.
My prob is that I have no family around me to take some slack. i have my partner and my ex sister in law and when I'm in full swing with Ch I can't even leave my room let alone look after my kids. i've head absence warnings in the past because of time off for Ch and going to work sick, ie the beast hitting me mid shift and that was when I wasn't so bad with them.
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keep your face to the sunshine and you will never see the shadow.
Alone we can do so little, together we can do so much.
Walking with a friend in the dark is better than walking alone in the light.
Helen keller
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Karla
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Re: WORKING WITH CH(UK).
« Reply #13 on: Jul 22nd, 2007, 2:36pm » |
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I applied for disability being chronic and getting hit 8x/day every day never ending. I also applied based on the depression that goes with it. I have been on disability now for 7 years. Good luck and good health to you.
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Karla
suffer chronic ch
ch.com groupie since 1999
Proud Mom of Chris USMC Semper Fi
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horsegirl
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Cluster Headaches
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Re: WORKING WITH CH(UK).
« Reply #14 on: Jul 22nd, 2007, 8:17pm » |
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do you have ha that last more then 2 hours, because that is rare, should be able to leave your room within 2 hrs to take care of the kids, unless there realy young, and then ofcourse 2 hrs is to long.I remember my first husband being such a jerk that he would make me give the baby a bottle during a full blown ha, kip 8 or more, it might be to hard to hold a job , but when it comes to being a good mother, thank god we can summon unknown strength we didnt know we had,.
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