14th March 2019

Hi All,

Hope you are all keeping well.

Hopefully as the weather improves some of our symptoms will ease.

I have a new issue I must go for a mammogram which will be this week.  It is important to check if there are any new symptoms go to your doctor.  I am sure everything will be fine.

I have had a check-up with the endo department Addison’s seems to be okay now up till this morning.  Unfortunately, after only a few hours sleep I ended up with the shakes and pains in my legs and stomach.  I have doubled my dosage today hopefully all back to normal in the next day or two.  I have found a crave salt daily lately but that could be stress related.

Behcet’s is being managed I am on Sativex which means I am now taking less pain medication.  I have stopped the Gabapentin and only take one paracetamol or dihydrocodeine a day.  It seems more manageable now.

Dercums is not behaving having electric type shocks in my legs when laying in my bed and I feel swollen if that makes any sense….  My sleep patterns are quite bad now where I can take ages to get off to sleep or wake up during the night for no apparent reason. 

The IBS is still very up and down which makes it hard to go out.  I did manage to recently go shopping in my wheelchair and felt proud that I did it.  Always remember it’s the little steps we take we should show pride in. 

The lymphedema stockings are working well and keeping the swelling down in my lower legs.  I am going to also try ginger massage oils (not sure if this will work on the dercums swelling). 

I have suffered chronic fatigue to the point of feeling faint and not being able to think straight.  I have just had to lay down and rest.  I put this down to my poor sleep.  I am trying lavender and Viridian and have been prescribed a small amount of sleeping pills so I can take two nights a week to ensure I am rested. 

I have also a new hobby diamond painting which is sticking little gems to canvas.  It is all numbered and colour co-ordinated and is actually therapeutic.

Motto: Give yourself a pat on the back when you do something you haven’t been able to do for ages.