Today was the day that I was finally connecting with my GP, after waiting nearly two months to speak to her. Grantedc, had I not gone to the toilet on the 23rd December, I could have spoken to her then however I had to go and missed the call. When I called back, literally 2 mins after her call , I was told to make another phone consultation with her and I did!! That was for today!
Today she is sick! I was told the next available appointment is the 31st January. Well, that was the story the Receptionist told me. It turns out she wasn’t sick at all and did call me within an hour.
I broke down! I am so, so very tired of having to fight to be heard.
I am so tired of fighting full stop! Im am fed up of putting on a happy bloody face. Of pretending that I don’t hurt or that I am not in pain. That I don’t vomit every other day or sometimes I vomit for days in a row. The burning on my face, neck and chin(s). My toes and fingers stiff, sore and the chilblains. Getting cold so covering up and then being so hot your body feels like its on fire.
The amount of energy that it takes me to go upstairs is ridiculous. Sometimes I have to stay up there because I don’t have the energy to walk back downstairs.
let us not forget the night sweats, which only happens from my waist down, Both the Hubs and I often think my stoma bag has leaked And I have peed the bed, when in actual fact its just the sweaty legs.
Everyday, in order to get out of bed, I have to use the radiator to pull up and then stumble to the loo. I have to take it slow in the morning as the legs aren’t ready to work. Feels like my feet and legs aren’t attached properly to my body. I have trouble bathing, it is a bit tricky to get into the bath however its a nightmare trying to get out. I feel like a beached whale. I use the sink (again) to pull me out. sometimes this takes a few attempts.
Empathic? I think not!
The Consultants and Doctors that see me are all good at explaining their next step, that they recommend I take, but no-one actually listens to how all this shit affects my daily life and more to the point, my quality of life. The trouble is that they just know know or understand how all the illnesses and diseases affect ME!
I was actually told today, that once I start taking a “new medication” all my symptoms will magically go away. The leg pains, the sickness, the headaches, the general feeling of being unwell. the breathlessness that I have had since 2014, all of it….. *POOF* is just going to disappear. I reminded her that I was told it would all go away after the last “new medication” I took. She told me to “hang on in there” and to “stay positive.”
Forgive me for being sceptical.….
There are only so many times you can think yourself “positive.” There are only so many times that you can convince yourself to ‘just carry on regardless,.” That they pain will go away or that you won’t feel so breathless and unwell tomorrow. But what if it turns in weeks, months and years of pain, of hurting, of struggling? I feel that I come across as a “moaning Annie’ and that I m not grateful for being alive but I AM grateful. I just want to be WELL to enjoy it.
As always…. sending love & hugs