Botox update

I had my three month Botox injection in my neck on the 13th September.     Not to relieve pain as I was at that time pain free, but to reduce stiffness in my neck.

Although Botox has always been a relief for pain and stiffness in the past.  This time I have found myself with a lot of pain in my neck following the injection.  My neck is also a lot stiffer than it was previously.  I was told to give it a few days to see how it goes.  However after giving it a good 2 weeks I can safely say it hasn’t worked, this time. Ah well only another 2 1/2 months to wait until I can have it again.


Update on my clubbed toes

Good afternoon all ,

I went to the hospital appointment last Thursday because of my clubbed toes . And the plan of attack is to cut the tendons in my toes so hopefully they will be straight again .

Happy happy day’s so just waiting for my surgery appointment .


Clubbed toes

I have an appointment on Thursday about my clubbed toes on my right foot . The appointment is with an orthopaedic surgeon , which I am quite worried about , as I think they are going to suggest surgery to pin my toes straight .

I will update you after my appointment .


New ankle brace

Good morning all,

I have just been to the orthotics dept at my local hospital for a new ankle brace . It is just like a sock for my left ankle, and it is fantastic. I have a full brace made from plastic on my right leg for severe foot drop , but this new ankle brace is fantastic , I am over the moon with it , as instead of walking on the  my left side of  foot it has given me more balance when I walk with my stick , so happy happy day’s.


Warmest regards Darren


I don’t  know why only I’ve started falllibg asleep throug the day.  Eerytime I Lower my head,, e.g When reading a book, praying. I inevetiatable fall asleep.  Yesterday I slept all the way through the teachings at church then in the afternoon whilst our for a meal with friends I again started to fall asleep.   I came home and want straight bed and slept for a further 3 hours.

I  believe Im taking after my dad and my brother, who slept / sleep a lot of the time.

I do not want to sleep constantly.!  And it concerns me.



Hello folks , not illness related , but I thought I would share . The DWP have finally received my PIP application form. I would like to thank , citizens advice and everyone at the Eden Valley Hospice for there help in and input with the forms . So wish me luck and let the fun commence lol.


Warmest regards Darren

Botox day / Breaking my toes

Good morning all ,

Today is my Botox day , that is an injection into my left leg to stop my big toe from extending upwards . Hip hip hooray .

Now also on the down side they are now looking into breaking my toes to try and straighten them as my toes on my right foot are clubbed . ” bugger” lol .


In a dark place in my life Darren

Hello folks

I am feeling really really low  at the moment , probably just a part of my life which is expected .

Due to my condition worsening , leg spasm and walking on my right foot with clubbed toes giving me alot of pain .And also knowing what the future holds due to seeing my father deteriorate over the years .Sorry if this seems like doom and gloom but just been honest.

On the bright side it is my birthday tomorrow 48 (bugger) lol and the sun is shining . I always remember” life isn’t about waiting for the storm to pass , it is about learning to dance in the rain .


Orthotics Darren

Good morning all , had an appointment with orthotics dept at local hospital yesterday due to my foot been clubbed and walking on my leg brace is very sore .

Unfortunately they couldn’t help me after trying to put something on my leg brace to try and straighten my toes , and give them there due they even tried to make something to go under my toes. Using some form of putty , that didn’t work either , so unfortunately they had to give up with the job which made me quite sad . So I think the next step is to refer me to Podiatrist which I already have seen . Happy days lol


I want to be A MAN

As if having Neuroferritinopathy isn’t bad enough on it’s own.  To have to go through the menopause at the same time. Trust me its NO fun, flush, hot sweat, flush, hot sweat, flush …. then there’s the middle age spread.  Which keeps on spreading. And I’ve only been going through it for a couple of months. Ive been told it can go on for years 😪.  The difficulty I have  is that because Neuroferritnopathy affects the Basal Ganglia which Controls your muscles, effectively making them weaker and un-coordinated. I’m unable to do any exercise to get shut of it, and am currently down to eating 1 lettuce leaf a day.

I’ll use Darren’s word ” Bugger”