What hurts today??

Hello there!

I am not actually that bad today, a bit achy from being out and about with Caitlan yesterday, but not bad, for me!

My ankles are swollen, they swell every day, the doctor thinks it is the strain on my kidneys from the medication I take every day. I have numbness in my fingers, which is annoying as I am having to type every word of this about 5 times each because my fingers aren't going where I think they are! I have a lot of pain in my mid section today, which is usual, pains around my ribs and sternum which keeps catching my breath..I did have a headache when I woke up, but I have had a bit of fresh air this morning and it has now gone..

Every day I awake to different symptoms or my symptoms in different degrees of severity!! These symptoms can last all day, a minute, an hour or a few hours, I never know...I have now got to a stage where I consider each symptom, but I can't linger on it, otherwise I would not get on with anything else all day! I have times where the symptoms aren't controlled by medication and I can't ignore them, or I have too much time on my hands and I think about them too much...I have to keep busy either by being with other people or by doing many different tasks... If I sit still too long and say..watch TV, I get fidgety, it allows me to feel my symptoms and then I get in to real pain..I know the pain is real and I am not imagining it, but if I try to forget it, it does go to the back of my mind a lot of the time.. Mind over matter and sheer bloodyminded-ness otherwise I would never get out of bed!

I have to be really careful with others who are ill though, my sensitivity for pain is huge, I used to be a very sympathetic nurse, but living with pain every day does harden you, the more pain you have, the better you deal with it I think. I have to remind myself to acknowledge one of the kids "hurts" or my husband having a "sore back". "Sore back??" - you don't know what a sore back is!!?? I have to stop myself saying this, "Welcome to my world" springs to mind, but I can't say it as I have to empathise and acknowledge how ill or tired someone else feels. Just because I am tired and in pain all the time, doesn't make their pain any less...in fact, because they are not used to being in pain, their pain is all the worse!

Some people close to me have commented that they realise how I feel now if they come down with flu or a heavy cold, but this is how I feel every day, they are going to get over their flu in a few days..living with Hughes or any other autoimmune condition means that the flu like symptoms can happen every day, or an hour a day or even come and go during the day, very unpredictable.

The unpredictability of this syndrome is very difficult to cope with as it becomes hard to plan events, social meet ups and occasions. I cannot tell how I am going to be from one minute to the next, never mind next June 14th??!! I went to my nephew's wedding last month, it was great to see everyone and the kids had a fabulous weekend. We travelled down to the midlands on the Friday evening and spent the night with one sister, to then have the wedding the following day with another sister..by 5pm I was ready for bed! I was very tired, in pain, as well as being frustrated with myself for being like this...I stayed until the end of the evening and I was glad that I did, but the following week I was really not good at all.. I wouldn't have missed it for the world though, I just can't do it every weekend!! I really do try to do as much as I used to, but I also have to pace myself, otherwise I can make myself really unwell. My husband is good at knowing that I need to get some space and relaxation and soon takes the kids out so that I can have a rest or do what I need to do - shower, bed, lie on the floor, whatever helps me..

Thanks for reading
With love
Wend x x x x