When you can't breathe
I love watching hospital programmes on TV, especially the real life ones. I have always been fascinated by how the body works and how people have worked and researched ways to fix up parts of us that would otherwise kill or seriously maim us as people. Obviously there are a million different circumstances that have an effect on how well these work on any one person at any one time, but being allowed to shadow a senior house officer in my late teens was an amazing experience and was the career I initially wanted to follow, until I saw how little the doctors actually know the patients. It was then I decided nursing was a better fit for me. I did begin my nursing training but that is a whole other story. However, through shadowing doctors, volunteering at the hospital when I was younger, shadowing nurses, starting my nursing training, and various health conditions that have affected myself and my loved ones, I have a pretty good understanding of things. Nowhere near that required for any diagnosis or treatment plan, but enough to know when I am being fobbed off. Plus I have a good amount of common sense.
Besides this I do firmly believe that people are the best experts in their own bodies, and parents know their children better than anyone else does.
I live with chronic pain and chronic fatigue. I have a reasonably high pain threshold as a result. Yes I do take painkillers daily to help me cope with the pain, yes I take extra painkillers on days and nights when it is hard to deal with, but rarely does it get to the point that I cannot manage the pain with the medication I am already prescribed or can purchase over the counter. I have had tattoos that I have found relaxing rather than painful, teeth that have literally crumbled away and had to be taken out in pieces that haven't been any more than an irritation.
So when we had to pull off the motorway because I was writhing in pain in the passenger seat, panting through the pain as if I was in labour, sweating with the pain, feeling nauseous and instantly throwing the door open and lying down across the front of the car to try and relieve some of it, I and my family knew there was something serious going on. This not a little pain where I have stubbed my toe or pulled a muscle, this was extremely painful.
I dialled 111 and handed the phone to my husband whilst my son had dialled 999 from the back of the car. The man who answered the 111 call said an ambulance would be there as soon as possible, so I was put into my wheelchair in the car park of the service station, panting and sweating, trying not to let my children see how much pain I was in as I didn't want to scare them any more than I already had. I was doing the typical mum thing- smiling through gritted teeth into the back of the car, asking if my two youngest were doing alright, checking they were coping.
Around 20minutes later the phone rang. It was the man from 111 phoning us to say we should make our own way to A&E because the ambulances were all busy with life threatening emergencies.
I get it. I wasn't dying. I completely understand they have to prioritise their resources, but why not tell us that 20minutes ago?
It turned out the closest A&E was a 10minutes drive away.
We eventually found the disabled parking (right next to a full height kerb), paid for the same and headed into the department. There was a queue coming out of the door. I noticed a sign pointing to the urgent care centre and decided to have a look how busy they were, but when we got to their department the doors were sealed with a further sign that said 'Referrals only'. Back to the queue in A&E. By this time I needed a wee (and I really can't hold it). My husband was sent to ask at reception for a bottle, but came back empty handed. I then sent him to the cafe for an empty cup and peed in that (in the toilets, not in the corridor...I wasn't that desperate).
We got in the queue (which hadn't moved) and I saw a whiteboard through the window that said '30minute wait for triage. 3 hour wait for Dr'. The pain was nowhere near as bad as it had been when we had first had to stop and I had my three children with me who each live with autism and ADHD. There was no way they were going to cope with that length of wait. So we headed home, armed with extra painkillers from a nearby garage forecourt.
There was a bank holiday that weekend so I did try as soon as we arrived home to get a GP appointment but they were full. It wasn't until the next Tuesday that I saw a GP and I honestly wish I had saved my spoons (spoonie life spoons)and not bothered.
I arrived in my wheelchair, legs and arm tremoring as usual, bottle of wee with me, and told her exactly what had been happening since that Friday when it was terribly beyond painful. She seemed to be listening to me, but then asked me if my legs usually shake (please bother to read my notes) and if I had a bottle of wee with me. She barely let the dip stick touch the urine before holding it in the air for two seconds (being generous) and declaring it was clear. She told me I was urinating so much because I was drinking too much.
Yes, that's right, a GP told me I was drinking too much, and she didn't mean alcohol or caffeine.
Every night since this started (7nights now) I have been having night sweats to the point of needing a towel in my bed (and today I discovered bamboo pyjamas online so have ordered myself some to try), have been up atleast 3, usually 5 times a night to urinate, plus peeing atleast 7 times a day too. I am sorry to go into so much detail there, but does that sound normal to you?
I do have IBS, and have done for almost 20 years now, so am careful what I eat and drink- no caffeine, very little fizz, no alcohol, low fat, no rich foods or drinks, no dairy, no eggs, no yeast, no soya etc (lots of food intolerances and allergies), plus I cannot walk so I can't exactly pop into the kitchen to get another glass of water to drink. I have to wait to be given drinks or keep asking people for them. I drink 2 cups of decaf tea a day and a litre of water (sometimes with squash in it for flavour). I have done this for a long time. I have not been peeing this much all that time or having this stabbing pain.
Therefore, common sense dictates something has happened in my body. Something that causes initial pain, moves from your back to your front where the pain becomes less frequent but remains at the same level. Right?
I thought it might be a kidney stone because the pain started under my ribs on my right and moved around my side at its worst to my groin. But this would have shown up in the urinalysis they sent off.
Maybe it is a UTI (urinary tract infection) but that would also have shown up in urinalysis they sent away and it would probably hurt or burn when I pee, rather than when I need to.
So what is it?
It is driving me nuts. I have been joking about sleeping on the commode because despite getting there on time and using it, as soon as I stand up I get that same painful feeling of urgently needing a wee again. Believe me when I tell you this is not only frustrating and painful but extremely tiring.
The GP I saw doesn't care what it is. After telling me the urine stick was clear during that appointment she sent me on my way. What about the pain? What about the constant trips to the commode? What about the urgency? Why does it matter if my legs are shaking? Why does it matter what school my children go to? What are you going to do to help me?
The next day I had a prebooked appointment with a different, better GP about the tremoring and also needed a mole checking so couldn't add a third issue into the mix on one appointment too. She listened, wrote to the neurologist, gave me advice to chase them from my side too, was interested and wanted to help. Such a difference.
Because the GP I saw about my pains didn't listen or want to help me, and I still have the same symptoms I had a week ago, I will have to return to see another GP about the same problem. I was sat there telling her I had been in pain worse than childbirth and she did nothing. Why not refer me to urology after the dipstick showed nothing in 2 seconds? Why not arrange an ultrasound of my bladder f kidneys? Why not give me a 24hour urine collection? Why not do something?
The irony.
The very next day there was a press article about the shortage of GPs and the problems people are having getting an appointment (click here). I suggest that this is because there are GPs like her who do not listen and do not act. This then sees patients having to return, to use up further appointments for the same problem. This clogs the system up and means other people cannot get appointment when they need them.
Surely that is common sense?
My solution? I have booked a private MRI scan of my abdomen and pelvis to check everything is ok because I already know I have problems in my cervical spine that I suspect may be similar lower down and may be aggravating nerves in my body. If the doctors aren't going to do their job on the NHS, then patients have no choice but to either be happily ignorant and fobbed off, ignored or use credit to get private scans carried out. The MRI will be carried out at an NHS hospital, during normal hours, by their regular NHS staff but paid for privately. How does that make any sense please?
We faced this with autism assessments, ADHD assessments, gynaecological investigations and chronic neck problems, all of which came back with diagnoses that have been confirmed after the fact and some sort of treatment plan arranged. All of the people we have seen as private patients have also worked for the NHS.
In the meantime I will continue with the acupuncture, badgering my husband to help me massage my neck and back, take painkillers, use heat and cold patches, use my TENS machine, resist the move to sleeping on the commode and see what plan the chiropractor comes up with for treatment this week. Eek!
It does appear that once one has been diagnosed with a chronic illness, such as fibromyalgia, chronic fatigue syndrome, or any others, then every other symptom or trip to a doctor sees you being fobbed off and it being treated as just another symptom of said illness instead of trying to help.
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