Bloody blood tests

I received a call from the receptionist the day before yesterday before asking me to go in and see a doctor following some blood tests I had recently had done. Straight away I thought that this was not going to be good. You see I had not just had one set of blood tests done, I'd had two. After the first set I received a call telling me that the doctor wants the blood tests repeating because of some of the results. So I went and had them done again but apparently they weren't too great either which is why I found myself yesterday at the doctors surgery waiting to see a GP that I don't see very often. 

That's the thing with GP surgeries now. It's so damn hard to get an appointment that I end up having to take one with any of the doctors, rather than my own doctor who knows my medical history intricately. There's 5 doctors at my surgery but I believe that some inner city practices can have 2 or 3 times that many. How is there ever continuity of care? I suppose it's ok if you're just going with a cough or tonsillitis, then it doesn't matter who you see. But if you have a medical history like mine I can spend half of the appointment telling a different doctor all about it, watching as their facial expression changes from the cherry 'hello, how can I help today?' to 'oh fuck, I've got a right one here!'

Oops, I've got on my soapbox again! Anyway, I went in to see the doctor who told me that my blood tests had shown a few things. The first is that my inflammatory markers were up meaning that there's active bowel disease at the moment. Er, yes, I know. I'm the one spending most of my time either on the toilet or in bed! I had wondered if the pouchitis was back but the blood tests seem to confirm it so it's back on antibiotics I go. They're mega strong ones at a mega dose and I know they're going to make me feel like crap because they did when I was on them a few months ago. 

The doctor also said that my iron levels are dropping and I'm now anaemic. The doctor said that suggests to him that I'm losing blood which he assumed was coming out if the back passage but it's not. So where am I bleeding from? Your guess is as good as mine. 

Another thing that we discussed is the difficulties that I'm having with my memory. When I mention this to people I often get the response "oh my memory's crap too. It's nothing to worry about. It will be your age/your medication/due to stress/because you're tired/because you're run down/your're trying to remember too much stuff/you've got lots going on." You get the picture. And maybe it is down to one or more or a combination of those things. The trouble is though that this isn't forgetting to buy milk when you go shopping or forgetting the date, this is different and it's starting to interfere with life. 

I had started to write a blog post called 'count backwards from 20' (and I will explain the title I'm a mo). But do you know what the irony is? I forgot to finish the bloody thing! Over the last few months I've noticed, as have others, that I'm becoming incredibly forgetful. If you asked me at lunchtime what I had for breakfast, I couldn't tell you. Sometimes I have no idea what the day is and can ask hubby the question of 'what day is it?' over and over, three, four, sometimes five times. I forget words and will be flayling around trying to describe an item and it looks like I'm playing pictionary. And they're not big complicated words, just everyday vocabulary. I turned on the laptop the other day and sat there staring at it as I had completely forgotten how to type! 

Friends started to joke about how many times I would repeat an anecdote or ask them a question and that's when I began to think that maybe I should get this checked out. When I mentioned my concerns to the GP a few weeks ago she said that inflammatory bowel disease can cause memory problems. Great. Is there any part if the body that this disease doesn't fuck up? 

So she did what must be the standard memory test. She gave me an address to remember and then asked a series of questions like "what year is it?", "who is the prime minister?" and "can you count backwards from 20 please?" (Aha! I hear you say! I get the title of the blog now!) I did forget the address but managed all the other questions but to me it is a bit farcical. Yes, I know my numbers but I don't know whether I've taken my medication this morning or not. I don't know that I've asked Hubby the time 5 times already in the last 5 minutes. I don't know why I've walked into a room. I don't know why I'm suggesting that we go to the cinema to see a film that we saw 3 weeks previously (of which I have no recollection). Sob. 😥

So when I told the GP this and then started to sob, I think she understood that this was more than just being a bit forgetful and it was her that arranged the blood tests that led me to be back at the doctors surgery yesterday. 

So now the doctor has decided that I need to have an MRI scan done of my head. That will show if there is anything causing the problems or if it shows nothing (fingers crossed) then yes, we can chalk it up to medication, stress etc. 

Linked to the memory problem I also sat in the chair telling the doctor that I just 'can't cope with life'. Not in a mentally ill way, incase that what you're thinking. I doing blame you if you are. The doctor did and he did that sympathetic voice that goes with the question "and how is your mood at the moment?" Do you know what? It's fine. Emotionally I'm strong. It's just a shame I can't say the same for my body!

So I told him: I'm exhausted, I'm in pain, I have naughty bowels that don't absorb fluids so I have to have them put through a tube in my chest, I can't eat anything other than custard, rice, cheese and fudge so I have to be fed through the tube in my chest, my pouch doesn't work and I'm still incontinent over a year after my surgery, I need to take over 70 tablets a day to survive and the doctors at St Marks have told me that this is probably as good as it's going to get. So maybe I should rephrase what I said. I don't find it difficult to cope with life, I just find it damn near impossible to cope with my life. 

On a good day I might be able to go out for coffee with friends or get the kids from school but on a bad day I can barely get out of bed. And then there are the medium days where I would like to stay in bed to rest and stop them from developing into fully blown mega bad times but I can't cause I've got 2 kids that need a Mum. They've missed out on having one so much in the last 18 months and sometimes I wonder how I manage to keep going. It's certainly not strong coffee and red bull like it used to be; it's more likely to be guilt and the ton of medication I'm on! 

So after I told him all of this as well as the fact that I struggle to get around the house sometimes, that if my bad leg is bad then I can't have a shower because I can't get into the bath and that sometimes I'm just too tired to cook, clean, iron etc. the  doctor asked me how I felt about having carers. The problem with that is that I never know when I'm going to need them. I don't know what sort of day it's going to be until I wake up and to honest it can change, just like that, from good to bad and back again in the space of a day. So that's not going to work as they work on a more structured basis. So he said he was going to refer me to social services. 

ALARM BELLS START RINGING LOUDLY IN MY HEAD!

They will come round and assess you and see what help and support you might need, the doctor tells me. 

ALARM BELLS ARE STILL RINGING

They might install grab rails for you or suggest other appliances that may help you around the house, he said. 

THEY ARE GOING TO TAKE THE KIDS AWAY

They are not going to take your kids away, that's a seperate area of social services, he told me. It was as if he could read my mind! He told me that kids are kept with junkie parents so long as they're being fed and clothed. But when I told a friend that she said "Yes but it's always the nice middle class families that have their kids taken off them. You read about it in the paper."  Thanks. That's made me feel loads better. 

So now whenever the house phone rings I jump out of my skin and answer it tentatively in case it's them calling to make an appointment whereas I would usually just leave it to ring knowing it would be a call asking if I've claimed my PPI or if I've had an accident that wasbg my fault or trying to sell me some pile of crap. Fingers crossed they only do what the doctor says they will. But to be fair if they took the kids off me within 5 minutes they would be bringing them back! 

NB x