_{IIH and Working
Working
working with IIH}


[You must be registered and logged in to see this image.] I was just wondering what the percentage of all of us IIH patients are that are able to hold down a full time job? I guess I am trying to measure my own successes against those of others similarly situated. Has anyone taken a poll?

Believe it or not there are quite a few people with IIH who are able to continue working once they have their pressure under control with medication or even after surgery. I myself worked continuously from my diagnosis until a few years ago. I did not stop working because I had to of my own accord it was due to other reasons related to my then employer, which was actually the NHS at the time. So all in all I worked for 20 years and that included having lumbar punctures and also shunt surgery. I now run this website and forums along side the team and I have written our booklets and designed the helpful log sheets.

Please dont think your life is over when you have IIH, because it isn't. Once you are on a successful treatment plan it is possible to continue. You don't get to read about other IIH sufferers doing this, because they probably don't feel the need to continue using support groups once everything is back on track. Keep your determination and be stubborn, and find ways to adapt to doing things differently by pacing yourself and working within your body's limits.

Keep your employer informed about what you have, and about what your treatment plan is and keep them updated from time to time. As long as you are upfront and give them all the necessary information they should be understanding, if they are not and do make life difficult for you, that then comes under disability discrimination, which takes it into legalities.

Heidi

Hi there! Like Heidi, I am able to work also.

I am self-employed and work primarily from a home office, which does allow for a bit more flexibility than a "traditional" work arrangement. (i.e. I can sometimes lay down for a few minutes when I'm having an especially tough day ... but usually I don't!) But again, like Heidi, I need to tell you I did not make accomodations or "settle" for this type of employment due to my disease. I was working in this same job prior to my diagnosis and have continued doing it because it is work that I love. Determined not to let IIH win!

I've only been diagnosed since December of last year, but I was having symptoms in the months before my diagnosis. I was able to keep a nightclub bartending job for 3 months before it really started to take its toll. I had to quit because I was just far too tired all of the time and the headaches were too much to take, I couldn't focus on what I was doing or serving customers. Currently I'm not working but I am a full time University student, looking for a part time job. It will be difficult but I'm determined not to let it impact my ability to work and study. I guess it's just a case of realising your abilities and adjusting your work/study schedule accordingly.

My story is a bit different because I actually have SIH, caused by the zoster virus (Shingles). My most challenging symptom has been the balance and equilibrium issues, which, of course, leads to major cognitive issues (the brain is too busy trying to maintain balance and works less on cognition). I used to drive truck long haul (over twenty years) but after getting sick (I tried an additional six months of driving) I had to stop driving commercially. I can barely drive my car. It has become better since getting my shunt last November, but as of now, I don't see me being able to go back to work. At 59, I am considered "too old" to retrain, so I do what I can to try to get my health better, get my mind sharper, and help others on this and other forums.

I did go through a period of time when I was unable to work, but had multiple heath issues including IIH. Once I had LP shunt I did some physical therapy and worked w/ bureau of vocational rehabilitation to get back to fulltime employment. I've been able to maintain steady employment since 2005..even w/ IIH issues and valve malfunction. There are things like FMLA in place to help employees w/ chronic illnesses. I'm not sure we're answering your question, but I hope it helps.

I worked on and off between surgeries and recovery but have not been able to go back to work. I hope one day I can go back to work however, I do not believe I will be able to teach as I did before IH. Way too many trigger factors and too demanding. I am going to go for my masters to find a less demanding job.

Hi there, I am currently holding down a full time supervisor job in retail. Don't get wrong I am exhausted all the time, most of the time I'm in bed after work & very rarely go out on my days off because of how tired I feel. I usually have to force myself to get up and get ready to go out. I work to 7pm almost every day, it is very hard but I don't want to give up my full time job.

Jennifer x

Hi, I work full time as a supervisor in a bank. I do find it tough cause I'm so tired all the time and can start to loose lack of concentration. I've explained my condition to my management and given them leaflets on it but they don't care they just want you in work. I can't afford to give up work so I just try get through it. I am in bed when I get home and sleep most of the day at the weekend just to get through the week. :(. My husband is great about the whole thing but as for friends and family no matter how much you explain it to them they don't understand!! very frustrating!!

I agree with morisse, friends and family just don't understand because we look "fine" to them. Luckily I have a great boss who takes into consideration what I am able to do I.e pull in pallets of stock & break them down which im unable to do as i physically can't do it & he has given me a lighter section to work in to what i was in previous to being diagnosed.
My friends don't seem to realise that when I say I'm tired it's not through laziness, it's this condition. :(

I guess as the dissenting voice, I found I was no longer able to work. I tried early on but found it too painful, too tiring and frankly too difficult. I was able to get Social Security Disability. In the beginning I missed working, there was a big hole in my life as what I did was so much a part of how I saw who I was.

Antigone, I too have found myself wondering who I am now that I am no longer working. I never planned on "retiring" let alone so early in my life. But I hope that the time and energy I invest on the many forums I am a member on will be helpful to others. It is that belief that makes me feel like I am still a productive member of society.
I hope you have been able to redine yourself.

I too never expected to be retired at the age of 39, but the upside of that is that I now am in a position to help and offer advice to other IIH'ers, and turned all the negatives of this disease in to a positive.That way I feel that it has a purpose and has just steered my life in a different direction.

I am proud of the fact that I managed to work fulltime throughout most of my life with IIH, and that the only reason I'm retired is because my Neurosurgeon retired me, and not because of my own choice, although I know he made the right choice for me. I must admit I get more satisfaction from helping others here, than I ever did with my job in the Health Service.

Always remember you are still you, the IIH is not you, it is just a part of your life, and there are amny other qualities that define and make up who you are. This disease is not one of them.

Heidi[You must be registered and logged in to see this image.]

All the swelling in my brain is in my frontal lobe, and I am experiencing periods of confusion, dizziness and when I am having bad headaches, my short term memories are not turning into long term. I can no longer do accounting. Maybe after my symptoms are more under control, I can go back to it. For now I hope my employer fires me so I can have some time to get well.

I am 25 and I was told by my former employee and other hospitals. They would never hire me because I am a liability. I lose my vision and I have very bad headaches. They watched me suffer through my pregnancy and before. I am not employed. It is not somethign I handled well. I cried for 4 days.

I have only recently been diagnosed. On March 23rd of this year. I have been out of work since this day as it is the day that I finally went to the hospital because I could no longer take the pain. I have not returned to work yet but I would like to. I am currently out on FMLA but That is only 23 weeks and I do not know what is going to happen after that. I am currently still in too much pain to work an exhausted as my doctors and I try to find the right combination of medicate to at least make me feel somewhat normal.

I am afraid that my employer is going to give me issues. I work for a hospital and you would thing they would understand but as of today no one from my department as even inquired about how I am doing. I think that says a lot. We shall see.

Yes you would think they would. I worked for the same Hospital who was treating my IIH and they made things very difficult for me in regards to my job. They did it each time I needed surgery till in the end I took them to court for Disability Discrimination. It hurts more I think when you work for a hospital thinking they will be more understanding and they're not. I'll keep my fingers crossed for you and hope that you have a much better outcome than I did.

Heidi

i work full time as a teacher ....school have been ok but it has been touch and go about time off for surgeries and hospital appointment etc they make me feel guilty about it and I have had ocupational health involved on several occasions to see if i am fit to do my job (fortunatley I was graded by ofsted as an outstanding teacher !!) . If i left I don't think anyone else would employ me because of the time off unfortunately.... sometimes it like being between a rock and a hard place

I am 25 and I was home on a medical leave from college for other reasons when I was diagnosed. I actually was able to come back to school and I now work just as hard, if not harder, than everyone else around here. This semester I am taking 15 credit hours (5 classes), I work for the IT department for my school for a minimum of 8 hours a week, I participate in a Catholic fellowship at the university across the street where I play djembe, an African hand drum, in the praise and worship band (that requires 10 hours a week between the actual meetings and rehearsal), and, somehow, this semester, I have found the time and energy to start a new club on my campus...a chapter of the Harry Potter Alliance, a global non-profit organization dedicated to social justice and personal empowerment. Next fall, I'll be taking 6 classes (19 credits), I am getting a promotion at my job, requiring me to work at least 3 more hours a week (and taking on much more responsibility - I'll be the manager for the group I am currently working for), I'll still have my Catholic fellowship and praise and worship band, and I'm going to be joining at least one choir, if not 2, and my club will really just be getting off the ground, hopefully gaining membership as the new year starts. That isn't to say that I don't have my bad days. There are many, many days when I have to send my professors e-mails to let them know that I won't be in class because I am incapacitated in bed with headaches and nausea. In fact, over the past 3 weeks, I have missed almost all of my 8am classes because my anti-nausea medicine stopped working...thankfully on Friday I got new medication, which for now seems to be helping a ton! At the same time, there are days when I drag myself to my fellowship and just sit there and cry because I can't participate like everyone else, either for IIH reasons or emotional reasons. To make all of this even more difficult, I go to school a 6.5 hour drive from my home, and I don't currently have any doctors here where I go to school. Anyway, I don't mean to rant, but I do mean to let you know that it is TOTALLY possible to do something full time while you have IIH. That doesn't mean it will be easy, but it's possible! Ok, I'm off to do a group project for statistics, work for an hour, and then I have a math test to finish, a math paper to finish, 3 philosophy papers to work on, a lexicon to get done, and 2 finals to study for...in addition to some everyday homework...wish me luck!

Wow, I'm exhausted just reading your post!! That's a whole lot of going on. Please be careful. By doing too much you can easily overdo and if your immune system dips, you can open yourself up to some really nasty illnesses. It's great to be busy, just not too busy. Watch that fine line, please!!

I am so very happy for all of you that have been able to just dive back in and the the bull by the horns. Unfortunately, I am not quite there yet. I am still is such much pain. It is a task to just get around the house and do basic things. The least bit of exertion sends me to bed. Today is the first day in many weeks that I haven't taken any narcotic pain medication. Believe me, it is not because I am not in pain. I don't know how much longer I can do this though. I am feeling miserable. I am scheduled to see the neurologist on Friday and will see what he has to say, I know that there is no way that I can return to work just yet. I feel like I am losing my mind. My memory seems to be failing me and I just feel awful all of the time. I just want some relief. The thought of living my life like this is scaring me senseless.

I have been very lucky that I have not had to have much time off work, I work in a Special Needs School, until now that is. My job is very physically demanding and the headaches I have after some form of physical exertion are immense. I have been off work for 2 weeks now - booked off for another week while I wait for my neuro app but am very worried about my work.

If you're in the US, you can request FMLA which gives you 12 weeks off a year for a given med condition, etc. You can weigh your options & also apply for social security disability, if your employer doesn't offer any short or long term disability. FMLA is instant protection, but others can take awhile to process. I've used them all at one time or another, but able to maintain full time employment since 2005 with FMLA.

I live in the UK not sure if we have anything like that here? i could sure use something similar.

thanks

bonnie

I am on disability and have not worked in about 3 years. I was only recently diagnosed with IIH, although I know I have had it at some level for at least 10 years, maybe 12 or more. I got Graves disease in 2000 and have mostly worked part time since then until stopping completely. I stopped because of my chemical sensitivity, and right as I was applying for disability for that I started having awful fatigue and nausea, such bad brain fog that I could barely function. the pain really wasn't that bad when it started, for me it is feeling like I am 100 feet underwater. you can't work like that, I could barely take care of my kids. I think it was that description of my poor functioning, without knowing what was causing it, that actually got me the social security.

Bonnie, I checked with other members of Admin Team & confirmed there is something similar in the UK. It's called the Equality Act of 2010 & you can find more information about it in our Benefit Resources section. I hope that helps!

I have been off work now for 4 weeks due to this lost vision at work one eye only. I work 40 hours 3rd shift on my feet and run heavy machinery and set it up. I also have to push tables of material weighing up to #150 .They can't understand why i am not at work or other coworkers. The HR personal have gone as far as to ask me how many vision episodes i think i will have this year. Trying to make it work but getting hard. Trying to go back but is my fault if my vision messes up and i get hurt cause i knew it could happen. Hoping to continue working have been with same company 13 years.

Maybe you could contact Advocacy for Patients with Chronic Illness, Inc they can give you advice on How to assert your rights under the Americans with Disabilities Act and How to assert your rights under the Family and Medical Leave Act, among other things.