FINDING A WAY TO ADAPT
Jules
Hi, here goes my story
1998 -stroke like symptoms. Scans all clear so they called it a blip ! Hospital for 2weeks. ! My daughter was just a few months old, my mum had to come and stay as I had no use of left leg or arm and no feeling. It was a horrendous year unable to be a real mum ,so all in my head !! NO WAY. Symptoms remained very strong for 1year as movement returned tremors and pins and needles set in. (And they have never subsided) I lost my job as a chef so we also had to move out as accommodation went with the job. Was I stressed ? Yes.
In 2000 managed to get a little job in primary school as the cook 320 kid as unlike previous job of 1500 meals at times a day, so really easy no stress or hassle could manage to discise the tremors.
2005 fell at work hurt my back slipped a disc and Bang -stroke like symptoms all came, back hospital 3 weeks Neurologists this time called it Essential Tremor. Coordination was affected this time and concentration
Lost catering job -Health and Safety. Remained working at the school as a teaching assistant. In many ways every cloud silver lining I guess I would never have changed career over 20 yrs as a caterer, but I loved my TA job. Always managing to hide/discise the tremors. Pins and needles just became normal to me. Coordination well just used to say I was clumsy or blame stuff on the Back pain.
2010. It all flared up again. Hospital for a few weeks. Diagnosis this time functional disorder. When I checked the neuro web site I classed my self lucky as had only a few symptoms but could include some others which I had basically ignored -they are -coordination ,vagueness and feeling of looking in from the outside
Again the only pain was from the back injury.
2011 bad fall at work pushed ino road by a child I was working with this was in july so end of term
Suffered whiplash and concussion. Spent summer holidays fine just in a lot of pain and tremors very very strong. New school year started September I returned but did find I was struggling to cope with child kept worrying “what if etc ”
Oct 2011. Again Bang !! Husband rushed me to hospital looked like I had had a stroke (I have no recall of any of this )was totally incoherent. Husband thought I was going to die
Heard doc out side the curtain say she’s been in before its all in her head admitted into hospital but under Psychology !! But couldn’t walk hardly speak totaly disorientated and failed swallow test. Up on the ward that night I wanted the toilet a nurse wheeled over a comode and parked it by the bed and left ! called for help she returned and told me to do it myself I tried so hard to get up ended up on floor the other nurse came and she helped me. Luckly on that ward I met a lady with same symptoms. Next day saw psychiatrist boy was I depressed by the end Lol. But at no point saw neurologist
So new diagnosis Functional or Conversion Disorder and Depression. I can see a link that something usually occurred before onset of symptoms, but have also noticed each new episode takes me longer to adjust changes to -does that make sense?
I have had a wonderful Occupational therapist and physio. To help me. I have had to make many alterations to my life but always try to keep positive after all my illness requires life changes But is not a Cancer so not Life threatening.
So quick recap of symptoms
Tremors
Weakness left side
Migraine
Vagueness/dis orientation
Constant Cough(they say is like a nervous tic )but it takes away my breath so unable to speak and gives me sharp pain to my chest.
Personality changes -I now fear things more and have very little confidence. Will only go out places with someone
Total panic attack if I go to the school .
Occupation health has said unable to return to work. At first it was difficult, but happy with that decision now.
Get DLA lower rate
ESA in support group
Medication
Depression -I take Citalopram
Blood pressure high
Back pain-I take Diazepam
Wow never written it all down like this before
My family and real friends have been a tremendous help
I am Jules a mother, a wife, ready to adapt, and I have been diagnosed with a Functional Neurological Disorder.