Losing The Plot

Good Morning Bleeps.

Actually it is NOT a good morning. I am in so much pain and was yesterday too. I was fighting back tears as I kissed Phil and the girls goodbye when they left for their day a little while ago because I feel really down.

I am sort of used to dealing with some of these symptoms now and nothing is really stopping me in my tracks but this pain, well, I actually don't know what to do with myself.

When I was pregnant with my (now) 15 year old daughter Madeleine, my Doctor was concerned by how many urinary tract infections I was getting. I had suffered my whole life with them so I didn't really think about the "why" and just accepted it as part of how my quirky body works. I was sent to a specialist who ran a whole bunch of tests and it was discovered that I have a dodgy right kidney.

Now I know that "dodgy kidney" isn't very technical but I can't remember the exact diagnosis. What I do know is that my little right kidney doesn't function as it should but was functioning "just enough" that it didn't warrant taking out. I was advised to take a tablet every night when I went to bed to keep infection away from my bladder (and to reduce the risk of damaging the kidney any further). The problem is that I have a bit of a phobia of medication. I don't even take a pill for a headache and so I never did as I was told. I know, big shock!


Then a few years back (probably about five) I started getting abdominal pain on the right side, it used to wake me up at night it was that bad. I instantly thought of my poor liver because back then I was in a very unhappy marriage and drinking too much wine (not proud but just being honest) and so I went off to the doctors. He ran full blood tests (including liver function) and ordered a complete abdominal ultrasound. Everything came back fine. I remember laying there while the technician looked at all of my organs asking "is my liver ok?". He reassured me that it was fine and I won't lie that I was very relieved (and I confess somewhat surprised).

The pain continued so I went back to my GP who decided to send me for a colonoscopy. I know quite a lot of people that have had this test and reassured me that there was nothing to it. Yeah, right. Let's just say never again and leave it there. Nothing sinister was discovered and so the abdominal pain was never really explained other than it was suggested that maybe I had IBS. Personally, I didn't buy it but what else could it be? I'd had the tests and nothing else was flagging up as a possible reason so I just accepted it and carried on. Eventually the pain subsided by itself.

Yesterday I started to get serious pain in my right side and it kept waking me up all through the night. I went to bed by 8.30 because I was literally dead on my feet. I felt like I had been hit by a bus. I was even struggling to walk, my legs were so heavy. I was having to make a conscious effort to tell my brain to move each leg and I was exhausted.

Today the pain is still with me. It is in my back on the right side but is radiating right through my body. I can't really tell if the pain is coming from my kidney, from my abdominals or both! All I know is that it really bloody hurts and I don't know what to do about it.

It is at times like this when Lupus pops back into my mind because I know that Lupus can affect internal organs, mainly the kidneys and heart. My visions is shit again today and I am dizzy. My face is numb, my legs are heavy and burning. I am so pissed off with feeling like crap every bloody day. Honestly, I feel like I am going mad.

What do I do? Suffer out the pain and hope it goes away again? Go back to my GP to be treated like a hypochondriac nut job? No thanks. I honestly want to cry because I feel so alone and like I am going crazy. Sometimes I wish that how I was feeling on the inside would reflect in the way I actually look because then maybe other people could understand just how awful I feel.

I worry also because I have no faith in the NHS. My Uncle was sick for TWO YEARS and was fobbed off by his GP. He was suffering with pain and throwing up. They ruled out heart issues but ran no other tests, they just told him it was heartburn. He collapsed at work and was taken by ambulance to hospital, again all the heart stuff was checked but nothing else and he was discharged and sent home. Maybe I am too simplistic in the way I think but if someone is COLLAPSING and throwing up and you rule out one thing, don't you keep investigating until you figure out the cause?

He collapsed again and went to A&E. He was FINALLY diagnosed with gall stones but because he had been fobbed off for so long, one of those stones managed to block up his bile duct causing his pancreas to be poisoned. After two weeks in hospital his organs failed and he died. He was 41. This was just three years ago and I will never get over the anger at the way he was failed so disgustingly by our medical system and it certainly doesn't fill me with confidence, especially since I feel fobbed off too.

So my friends, what do I do? I don't feel like I have a Doctor that I can go to and even if I did, I bet they have a little note on my file that says "whack job alert, just smile and nod". The reality is that in the last two years I have only been to see them maybe 8 times and I certainly am not one of those people that is down at the surgery every week.

I have contacted a private Lupus clinic in London but testing and appointments will cost hundreds of pounds so unless I win the lottery, that isn't going to happen. Oh I don't know, hopefully the pain will just go on it's own and I will be able to get back into a positive mind-space again. Today I am sad, in pain and my mind is in over-drive with all the possibilities of what this might or might not be. I just have no faith in the NHS right now and this makes me feel scared.

So enough about me, how are YOU?