I’m coming to the realisation that I’m really quite poorly with this. It is also really affecting my mental health. I work full time but I think I may need some time to get better, rest, find the right meds and regime etc. However I feel guilty as I am saving for a house deposit and this could lead to me not having an income for a few months/reduced income. Has anyone else been in a similar situation my productivity at work is non existent as my brain has just had enough.
I was off sick for months, then returned on limited hours. If you have an occupational health adviser its best to speak with them.
it’s nothing to be feared, but unfortunately the support system has its limits: Capitalism doesn’t sit very well with sickness. I was eventually made ‘redundant’ … yeah … (so it’s a good thing I’m getting back to health!)
don’t worry too much about it. Get your symptoms under control, that should be your focus … worry about work later … the systems are there to take care of situations out of ones control … you can’t change it over night so don’t let it stress you out.
Also, I’ve learned the hard way that powering through or restarting too fast can lead to a way worse, much longer relapse. My worst episode started in September, started to abate in December. I took that to mean I should try to recover all the work I’d missed in between. By January I was completely disabled and only started to get back to work in March. This time, I’m listening to my body and taking it slow. Don’t be as hard headed as me.
@foursimplewords I had to stop working twice, and this was back in my mid and late 20s (I’m 31 now). I lasted working with vestibular migraine for a few years, while my husband finished his last semester of school and took time to find a decent full time job. At the time my main trigger was computer usage at work, so continuing to work became more and more difficult. I had to miss some days and leave early of course. When it first started I missed a week as I thought I had a bad flu.
The first time I stopped working for a little over a year and probably got 90% better. I started back up part-time at a new job with virtually no computer usage. I only had one incidence where I had to go home early after 5 hours under fluorescent lights. But a full time position doing the same work, again hardly anything with computers, fell into my lap practically. I wasn’t really looking for full time yet, but loved what I was doing so I took it. I was fine for months until my job description changed as the company lost funding for the research studies I was helping with. So once my work became more computer based I gradually got worse and worse again. I never had to leave early or not go in, but I could tell I was on borrowed time. Then I had my first spinning vertigo attack after an AM thunderstorm, turned over in bed, and couldn’t move or lift my head for 4 hours. I was never the same after that, couldn’t work for 2 weeks. I was weeks away to only working per diem anyway as I was going to graduate school, but I couldn’t finish out my 2 weeks notice. I worked 2 more times, but couldn’t continue. Then I started having problems driving, only made it to one graduate class and had to defer school and eventually cancel my registration 2 years later. I got a little better about 2 months later and could drive again, but then got worse and had to stop driving. Now I’ve been housebound for 2 years and 4 months.
So I have no idea how I got so much better the first time I stopped working and so much worse after the 2nd time. I only stopped one medication but it wasn’t supposed to be helping the dizziness and I was still ending up in the ER with dizziness while on it anyway. Everything else was the same both times. I must say I was SO glad to have stopped working at the job where all the triggers started. I was so stressed there too, the first few weeks after I stopped I could fell the stress just receding away, it was a wonderful feeling.
The financial part has been extremely difficult. We’ve barely gotten by, and have had 2 instances where we had to borrow some money from family. My husband’s job is weather dependent, so if we get a bunch of rain or a bad winter he gets less than 40 hours a week and is paid hourly. I’ve applied for disability (I live in the U.S.) and am waiting for a hearing which could take 12 to 18 months or longer (starting from August 2017).
I hear you completely on saving for a house. We are still in our first one bedroom apartment and NEVER planned on being here this long. I know this crappy beast of an illness isn’t my fault but I can’t help not feeling guilty for not making money to contribute and get us a better life (even though for the first few years of the marriage I was the one making the majority of the money).
Thanks everyone. I hate this illness.
Look for the positive. Adversity defines our character.
Have you spoken to your manager about how ill you feel and how it’s affecting your productivity?
Once you have done this, they should tell you to go home and see your doctor! Assuming they are very supportive, at the very least professional. I have had a Community Arts role in a school for the past 11 years and as directly employed by the local council I am entitled to Sick Leave - 6 months full pay, 6 months half pay. This has proved invaluable to me as before developing VM, I was a healthy individual - only having a week or so off on occasion due to flu. I’m currently going through my 3rd episode - just entering month number 3, Episode No.1 was 6 months, Episode No. 2 was 3 months.
Each time, I was off work for the duration and went back to work on a phased return / altered duties basis which worked brilliantly. Apart from this latest episode which started after a classic migraine headache, the first 2 came on after a severe bout of flu and chest infection.
I’ve never been in the position where I’ve developed an episode whilst at work, it’s always been following a period of illness during a school holiday or on a day off.
The problem with VM is that because by and large it is an ‘invisible’ illness unless your balance is severely and visibly affected and the fatigue causes excessive eye bags or dark circles (which I must admit has been a feature for me this time!!), no-one has any idea that you are poorly until you describe all of the many and disabling symptoms that it causes.
I really feel that you need to look after yourself, communicate with your employer, see your GP, take some time off to recouperate and forget about work. I know the road to recovery or shall we say to ‘base level’ isn’t easy or quick but at least this would be a step in the right direction!
None us wants to inflict this on our loved ones. It’s not up to us. The best we can do is to share the struggle with them and do what we can to heal. Relapses have their own timing. MAV changes all our plans. A good partner will try to understand. It’s easy to feel guilty. I know. I’m not eligible for income assistance. I own a business. I work or I don’t. If I can work, I get paid. If I cannot, I don’t. There is no unemployment or disability assistance for me. That means my husband works extra. I used to be the higher earner. I was really proud of that. We made sacrifices early in our marriage to send me to graduate school. That doesn’t matter now. The situation is what it is. He loves me, so we both do what we can. If your partner loves you, and I’m sure he does, he will understand. This is a condition the two of you must face together, as partners. Let the love live, even if the plans or the timing has to change.
Is there a good time for a relapse? It seems to me you are at about as good a time as any. You have shelter you don’t have to work to maintain. After you buy, the mortgage payments keep coming whether you are able to work or not. MAV may change your plans. It will also teach you to live within your means and maintain a nest egg just in case. These are valuable lessons and skills and it’s a blessing to learn them early.
None of us chooses to get a disabling neurological disorder. The best we can do is accept the truth of our circumstance, learn to adapt, and find new ways to thrive.
Can you take him with you to your appointment? It helped for me to take my husband and to have him read the 2014 Survival Guide on this site. They don’t get it. How could they? It’s hard for us to understand and accept and we’re the ones living with it.
I barely understand it and my symptoms started when I was your age. I’m 45. I think the thing is, nobody understands it all that well.
Best of luck with Dr. S.
thank you - this is the thing isn’t it…everyone says ‘it may be this mechanism or that mechanism’…and when you ask how drugs work they’ll say ‘oh its possibly this or that’…not very reassuring lol!
Don’t get me started on that subject!!
Best of luck with Dr. S!
I’m excited to see him again, how sad is that hahah
I came out of my last appt feeling super positive for the first time ever, unfortunately the med he prescribed didn’t agree with me so I stopped it and have been trying to manage VM without meds, not great for me as its been awful recently
The guy knows his treatment. He’ll find something!
fingers crossed! I have a feeling the next drug may be topamax as I’ve now had three Dr’s mention it to me and I’ve resisted it each time hahah (including Dr S)
Topamax is a lot like Marmite, I hear!
yes and I’m hoping my body falls on the ‘love it’ side of the spectrum…no quality of life and can’t go on like this…