Tips for people with severe Myalgic Encephalomylitis who go through breast cancer

Diagnosis


 

90% of suffering and energy expenditure is on the mental and emotional factors throughout treatment. My advise is to manage this by upping a dose of antidepressants asap with your GP. Then I found it essential to get organised so then I am ready in advance to save energy.

The mastectomy and lymph node removal.


During hospital the main issues to overcome are:

-getting from lying to sitting position

-getting to the toilet (refusing the masses of drinks helps)

-getting an overnight stay if needed

-getting peace and quiet

 

Your arm will not work very well so if your just having one side done you will have one good arm.  The more lymph nodes you have removed, the longer it takes for the arm to recover.
I found a neck cushion made a massive difference. its very easy to hold the shoulder tense after the op. If you dont strain muscles this will make things much better.
I havent had any pain or obstacle to getting sleep. Earplugs and eyemask are big energy savers.

 

Recovering at home


Some people set up a lounger to sleep on so they dont have to rise from a lying position. An essential I found is a long stick with a hook. I use this to pull myself around to correct position and sit up. If you have saved energy successfully you will be as normal but with a limited arm. The arm can move some. light 2 arm tasks are ok. I advise having clothing that is easy to put on. I am wearing cardis and ponchos as I can put them on with one arm. The arm cannot be raise above shoulder height and the muscle where the lymph node is heling is affected by pushing and pulling.

I have severe ME for 22years. Ill post about other treatments as I go through them. I have the grade 3 fast cancer so it might turn into managing ME during terminal or just chemo then all clear I dunno.

I too have ME have suffered since 1989 - also have chronic facial pain too.

i am in a good patch well far less than well but not as badly affected as yourself - 

your tips are really useful 

I found the last two weeks after Diagnosis I have been much more tired 

think it’s all the appointments and worry plus my severe fear of have blood taken !!! 

I wish you well with your journey - it is really not fair to have to deal with ME and BC too 

have found I have has way more support with my BC than I have ever had with ME over the last 29years 

way more organised treatment and communication- understanding and support.

this is great but as ME suffers it’s a big shame that there is such disparity 

good luck 

 

liz