Work/ employment/ hobbies

[Robyn83]

Would love to hear back what fellow FND' ers do to get by- what work do you do? Or hobbies to get you up in the morning? I am facing a reality where I am becoming more and more limited to options and opportunities for work due to my FND symptoms and unwellness caused by FND. I am becoming more unreliable and unfuctionable to keep a job for very long anymore, added to the fact i am also type 1 diabetic and permanent damage to lungs due to falling sick to Legionaires so cannot tolerate air con or smokers well at all and very susceptible to getting sick again and again. I feel like I let my husband and 2 daughter's down all the time.

[Jofisher]

I developed FND after having fibromyalgia for about 15 years. Wit the fibromyalgia I was housebound for nearly five years then I did some volunteering until things improved further I then worked part time and then finally full time. Unfortunately after many years of managing to work I then had an injection in my neck at the hospital to try and stop pain but it triggered an episode that looked like a stroke and I was rushed to the hospital it wasn’t thankfully. But after that I never returned to work. I try to keep busy at home doing things I can do and build from there. I’m sad my working life is over but I’m glad I’m able to stop pushing myself as that only makes it worse. Concentrate on what you can do and pace yourself as pacing is key. You won’t always get it right but keep learning about your body it’s responses etc etc. I’m sure your husband and girls want to see you well and able to join in and be part of the family in however your able to and things will improve from where you are now. So good sleep hygiene a healthy diet some gently exercise and mindfulness if you can and pace pace pace and stop trying to fight this thing work with it and give it what it needs and you in turn will deep the benefits in the long run. You will still have some bad days now and again but they become fewer and you recover better. Good luck on your journey to better health

[Lucy-15]

Hi Robyn. Hope this finds you a better day …. At times far and few between I’m sure. This resonates with me deeply. The constant battle between not giving in to our symptoms / FND and pushing on and on, but then this can exasperate our symptoms too.

I pushed on for 7 years working long hours in an exhausting full time job. The journey to the office with my walking stick finished me off even before I started work!

I worked from home the last 4 years, but I took redundancy last year.

I’m now working part time from home in another temporary role, and have seen such an improvement in my pain and symptoms it’s incredible.

It’s taken me some counselling sessions, to see it’s ‘not giving in’, it’s not ‘failure’, it’s actually listening to my body and finally ( kinda!) accepting what is best, so I can live as full a life as possible.

I finally applied for PIP and it was declined. I may appeal, but at times it is scary that there is so very little financial support for this condition

I do wish you well and please don’t be so hard on yourself, we can only do what’s best for our bodies and yes pacing…. is so dull, but so very very important! It’s help me a lot too.

I’m training to be a counsellor now, so that I can decide the hours I can work to suit my health one day. It’s fascinating to be studying again after all these years.

Hope you too find something that is manageable and rewarding.

Take care Lucy x .

[kev60]

Hi, I am afraid to say I do very little. Since I had my diagnosis in 2019(it took18 months) I was told by my neurologist that i would be able to work, i have a problem with walking tend to end up in a wall or something then i suffer with what they call brain fog (forgetful mix words) it is so strange i worked in the glass trade for 40 years as a glass cutter working 70 hrs a week+ and then one day went to work and started to sway sent to hospital (blue light) thought i was having a stroke all clear. then diagnosed copd, gord and fnd as well as arthritis. and now ihave somuch pain abs, chest and spine my only respite is tosleep some times up to 30 hrs at a time. i am being referred to persistant physical symptoms services as they have no answers. i just have to live one day at a time some good some bad. hope you find your own path. sorry if its not that helpful

[Riley-Roo]

I worked as a preschool teacher for 20 years but had to give it up this year due to my FND. It isn't a job that you can pace yourself at, you have to keep up with the kids. I used to do marathons, canoe, kayak, hike, backpack and I love being outdoors. A year and a half ago they diagnosed me with FND. I have had severe back issues for the last 6 years and my neurologist diagnosed me with chronic pain onset FND. I don't have function of my left leg anymore and am losing function of my left arm, they know I need to have surgery to replace another disc in my cervical spine but with the last two surgeries I have had big seizures coming out of anesthesia and it is too big of a risk right now. That being said, I was use to be really active and loved my life, this has been such a big adjustment for me to find things that I can still do that bring me joy. At first, on my good days I would do as much as i could because I didn't know what the next day would bring but now I am learning to pace myself so I have more good days. I adopted a dog six months ago and she gives me something different to focus on and a reason to get out of bed each morning. She has also been great at keeping me on a schedule. I find predictable rest and active times help to bring me more good days. It is hard ,but pacing yourself and listening to your body will allow you to do the things that bring you joy.

[Mattie21]

I used to work in clinical setting/health for a number of years. However since getting FND I realised I was much better off working my own business at home. The work I do now is more focussed on reading/reviewing reports which suits my strengths as finding reading and writing easier. At first I didn't like the irregular hours but now I realise it works given my productivity fluctuates and I just aim to put a bit of money aside for just in case if work dries up for a bit.

I no longer work in health, it was hard driving to work, air conditioner, bright lights, talking to colleagues, face to face work with patients etc. When i got home i could barely talk to my family and just have to lie down or i would be very irritable. My auditory processing would go downhill and I wouldn't be able to hear properly either.

At home I work when it suits me, nap when I need to, choose to take on more of types of work I can tick off with less energy use. Ie less face meetings and phonecalls and more reading based.

I sometimes get a feeling where my throat closes off and I can't breathe properly. I regularly sing as blowing through straw into a cup of water/warm up exercises and then abdominal breathing during singing helps my baseline levels of functioning with my voice. When I get the tightness I just imagine I'm singing and it goes away.

I've recently learned to play guitar and its helping with my emotional regulation. I love music but find listening to my own playing easier on the ears as I can better predict sound that's coming compared to listening to tracks I used to.

I spend a lot of time outside in garden or playground with my kid. I also put in garden beds at my partners mums place as its something I love doing/gives me energy/way i can comfortably contribute.

I love cooking and realised I can only do it when everyone else is out of the house and its quiet. My partner doesn't mind loud places so he does all the shopping, makes sure I'll have everything I need by keeping everything well stocked. I cook and do dishes and then nap. When everyone gets home we reheat dinner. I do the dishes as again I can predict the sound otherwise I'm irritable if my partner does it.

I work less hours but now I need less money as I don't have to buy work clothes, pay for petrol, I have more home cooked meals which are cheaper, I have more time to shop/so I make better choices and only buy what I need, my everyday life has leisure in it and better work lifebalance so I don't need to holiday as much even post covid etc.

I did have a huge sense of loss and grief when I gave up my clinical work and change to my identity. But time makes things easier. That and realising I could succeed at home in ways I couldn't in society before which isn't to say I'm a failure or abominably lazy just that I'm not wired to live in what society considers to be normal every day life.

It has taken a few years to understand my strengths and my limitations and certainly its not easy process nor is there a singularly good approach. For example, I lived with lifelong auditory processing disorder, had lectures about it at uni and still didn't realise I had it until my 30s. But now I understand its probably why I can read so well as a way of getting around my weakness (but I just thought everyone else could read like that too/able to scan read text).

I wish you all the best with your journey. Goodluck.

[Robyn83 in reply to Mattie21]

Mattie what you have just described I can relate to on so many levels, even the noise from the vacuum cleaner drives me nuts unless I'm doing it! I have young children so I have to work very hard at my irritability or trying to distance myself without affecting my relationship with them. I am working at trying to secure a path that allows me to work from home but also allows flexibility if I need to sleep or other means of dealing with the FND for short periods of time. Finding work like that has so far been difficult, and may also need to consider my own buissness. I already make my own preserves for people, sell eggs from both ducks and chickens and grow my own produce plus heaps if gardening , which also acts as a detress for my FND and keeps me active for the Type 1 diabetes.Thank you for sharing your story!

[Eunomi]

Hi Robyn, have practiced Tia Chi and yoga for many years. Not suggesting you attend classes. However there are many wonderful videos on u tube . These include : master Lam Kam Chuen, chi Kung the way of energy, Wu style Tia ChiStand still and keep fit.both recommended.Not a Buddhist but also watch meditation session and music meditation, as a technique to aid relaxation

Do hope these help. I am retired and with FND and partially sighted, I find that sitting comfortably listening to music really helps,especially if it’s classical.

With daily brain fog and fatigue, I just pace myself and enjoy socialising, although my mobility’s poor.Also attend zoom meetings at my local church, which is still closed. I’m sure you let no one down, the condition is difficult for professionals to get their heads around never mind close families. However a day at a time and try to keep positive. On down days I watch Billy Connolly always makes me laugh.

Take care, good luck .look for things you and your family enjoy.