This is what my lounge room looks like at the moment (and has all week!)
Currently, I am making a claim against my Superannuation insurance and the amount of information they want is phenomenal – hence all the paper all over my lounge room (you can hardly see my laptop!)
They asked for all the basic stuff (which doctors have you seen, when was your first visit, when was your last visit, etc) My GP was fabulous by giving me my whole medical record on a disc, so I was able to give them 13 pages of treatments that I’ve tried and the dates – this had to include medications, supplements, alternative therapies, etc)
Finally, after a week of working on this form (and a lot of brain frazzle), I got to the last question: Please state in your own words how this disability is affecting you and/or make any further comments in relation to this claim.
This is my response:
Although, medically, I also suffer from depression, hyperthyroidism and morbid obesity, these conditions have no functional impact on my ability to obtain and retain employment. My claim is for my loss of functional capacity due to Fibromyalgia and its associated symptoms.
Currently there is no cure for Fibromyalgia, just management.
Despite reasonable treatment, I have been told by my doctors that any further reasonable treatment is unlikely to result in significant functional improvement.
I experience frequent (more than daily) periods of fatigue when performing day-to-day activities around my home and community. Ordinarily, I am able to walk to my local shops however, often I need to organise for some-one to pick me up for my return home. It is unsafe (and painful) for me to drive any considerable distance. I have slowed movements and reaction times, so I am very hesitant to drive my car. Also, my mind tends to wander (often in the middle of a conversation) so I believe I would be a danger to other drivers.
I am able to walk around a supermarket or shopping centre slowly for short periods (and I have recently been issued a Disabled Driver Permit so I can park closer to these places). I am regularly too fatigued to prepare my own meals or vacuum my house (I only have a 2 bedroom unit but I require Home Care services from the Glen Eira City Council). I do not shower regularly as getting in the shower, washing myself, getting dry then getting dressed often means I need to rest afterwards.
I can manage most daily activities requiring the use of my hands and arms, but I have difficulty picking up heavier objects (especially if the shape of the object is awkward), handling very small objects (eg: getting money or cards from my wallet), or doing any activity that requires strength (eg: cutting up watermelon or opening a jar).
My hands and arms ache if I need to drive my own car and I often experience numbness or tingling in my fingers. I describe the feeling as ‘carbonated blood’ – it feels like my insides are fizzy. My hands feel like they’re not attached to my arms – they feel both too heavy and very light at the same time. I regularly have severe throbbing in my wrists and up my arms.
I find it extremely difficult to move after sitting for longer than 15 minutes, although it is exceedingly uncomfortable to sit in one position for any period of time. I need to move and stretch a lot to remain comfortable. Climbing or descending stairs causes shooting pains in my ankles and lower legs. My ankles and feet feel swollen (despite no visible swelling) and numb. The bones in my feet feel like they have moved while I was sitting down; when I stand up, they hurt and feel like they’re moving (painfully) back into place.
I have a heightened sensitivity to light and sound. I cannot attend live theatre or movies due to a sensory overload. Telephone calls must not be too long. Family dinners (and the associated noise and children) regularly result in severe headaches. I am extremely susceptible to outside stimuli (eg: I have to ask my mother to turn off the radio when I travel in her car). Too much surrounding conversation or activity causes my brain to shut down – I find that I can no longer think and I need to find a quiet place. When it is really bad, I hide inside my house with the blinds closed and candles burning for light.
I experience ‘Fibro Fog’ in waves. I can physically feel when my mind starts to lose clarity. My long-term memory is fine but I have difficulty recalling events and activities of more recent times (I hate it when my mother tells me that we’ve spoken about something when we haven’t then she says we have and that I can’t remember because my brain’s not working properly). I require lists to remember even one item at the supermarket or activities that I need to do – I have gone to the supermarket before when, in fact, I was supposed to go a doctor’s appointment.
I am easily distracted and have significant difficulty focusing on a task if there are other activities occurring nearby (I look at the remote control – lots of buttons – what did I want to do with that? Why did I pick up the remote control? Oh yeah, delete – which button is that?). My levels of concentration have diminished greatly and I find myself forgetting what I was doing, or what I need to do, to finish a task. When this happens, I have to stop myself from getting anxious and stressed, take a breath and a step backwards and try to talk myself through it.
I often forget to complete regular tasks (eg: putting the bin out on rubbish night, picking up a loaf of bread). I can’t remember if I’ve already done things (eg: send an email or pay bills) earlier in the day. I realise that these are things that people may normally forget sometimes but I do it ALL the time.
I have difficulty in prioritising and need to think carefully about the order I put things on the lists. I find making a decision quite difficult and stressful. To avoid the situation, I tend to keep to regular habits (eg: specific takeaway meals on specific days). I try not to put anything important away as I frequently misplace things.
My head feels too heavy for my neck and shoulders. I have a dull ache permanently in my head and neck – even when I don’t have a ‘headache’.
Most worrying to me is my loss of words. I can’t find the words in my brain anymore. (This is most disturbing to me as I recently completed by Bachelor of Laws with Honours, so normally my brain is extremely organised).
The symptoms of Fibromyalgia are neither constant nor consistent. They can range from very mild to severe; and it can all happen within one day. They may come and go at different times and this is where my fundamental problem with employment lies. I have good days and bad days however I never know when these will occur. There is no consistency, although there appears to be more bad days than good.
As such, despite being able to work on my good days/hours, I am unable to provide an employer with any scheduled work days/times. My current employer has been very considerate and co-operative in regards to my condition. We have tried different combinations (eg: 3 hours x 3 days per week in the afternoons, working on the weekend when there are no distractions or noise, working late at night) however none of these options have worked reliably. I cannot envisage how I can maintain employment alongside this restrictive condition.
I also added some fact sheets from Arthritis Victoria, Dr Yen and Fibromyalgia Network.
So, do you think I covered most of it?
 Fibro fog is a term given to the variety of cognitive problems that many fibromyalgia sufferers face during their illness. Fibro fog encompasses memory loss, difficulties using language, and difficulties with learning. These symptoms tend to descend in a haze or “fog,” around the sufferer (http://www.fibromyalgia-symptoms.org/fibromyalgia_fibrofog.html as at 23 February 2013).