I’ve been quiet for a few days now. I tried to observe Sabbath – Friday evening to Saturday evening (another story) – then I just wanted to switch off from things yesterday.
This is a long boring post; just getting my feelings off my chest so to speak, so forgive me in advance!
I started writing this blog a few months back, when I realised that most everything that I wanted to do was now impossible; I could write a little each day however. My illness had become much worse over this last year, but I didn’t go to the doctors about it because as usual I thought that they wouldn’t believe me. I knew that something had definitely changed nonetheless; I felt weaker than ever.
Back in June, I’d started to have these funny episodes; I couldn’t really explain properly how I felt, but when it started, I knew that I had to sit down straight away. I felt a little nauseous and had strange sensations in my chest area – pain but nothing severe; I couldn’t put my finger on the problem.
One weekend in July, I was no longer uncertain. The strange feeling came over me again, then I experienced a sort of pain in the back of my throat. It traveled down towards my chest, the pain intensified, then traveled down my left arm; it was agonising. I sweated profusely and I could hardly get my breath. I used my inhalers and also put a diazipam under the tongue, thinking that it might be some kind of spasm, but deep down I knew that it wasn’t. The episode lasted about 20 minutes; it left me feeling very weak and my left arm ached all day. I had 5 attacks over the weekend; some waking me from sleep, and in the day when I did anything too physical.
Perhaps a different person would have called an ambulance, but I’m used to severe pain, and though I was frightened, I could cope with it. The other reasons I didn’t make that call is – like so many times before – I didn’t think that doctors would believe me. I really wasn’t prepared to go into hospital and go night after night without sleep, as you do in those noisy places. I was also afraid that they might mess up my medication, and if they did, I might face months of horrific pain again until the meds for the nerve pain kicked in. After the first couple of attacks, I got used to the pattern it would follow, so I wanted to hang on until I saw the doctor Monday morning. I resolved not to look anything up on the internet either; I was half scared to death already.
Monday came and my friend took me to the doctors; it was one of the senior G.P.s. He was always quite dismissive, but at least pleasant. I explained to him exactly what had happened, and he sat there with a bemused look on his face. He asked me nothing and told me nothing, just ordered a blood test, a heart monitor test, and gave me some more diazipam. I didn’t feel satisfied with the appointment, so I made another one with my own G.P., but I would have to wait 2 weeks.
Later the following week, I caught a virus, which caused continual attacks; it was very frightening. I then saw my own doctor who said that my heart monitor test was normal, but my cholesterol a little high. After hearing my symptoms nonetheless, she said that she would prescribe the nitrate spray, which she said was for angina. I asked her how would she know if it was angina, she replied that if the spray worked, then it was angina.
When I got home, I decided to look up the symptoms for angina, and they were exactly as I had experienced. In the back of my mind I wondered just why the original doctor hadn’t given me the spray; angina is a warning that a person may have a full blown heart attack: I could have died. True enough, the spray took the symptoms away, although at night, I would wake up to the attack in full throttle, so I had to wait a very unpleasant 5-7 minutes for the spray to work.
Later that week I had an appointment letter for the Rapid Assessment Cardiac Clinic. Unfortunately, the Wednesday of that week I caught another virus, so I was having attacks every 2 hours. By the time I attended the clinic the following week, I was in a really bad state. I hadn’t slept properly for over a week. I was given another standard heart monitor test, which came back normal, then I waited to see the doctor.
We didn’t have to wait too long before I was called. I then started to talk to the doctor as to why I thought this had come about. I’d been having terrible bowel problems due to pain medication making me constipated, and I’d go 3 days at a time in absolute agony with spasms. I was going to say that I thought it may have affected my heart, but instead I broke down and started babbling. The doctor tried to comfort me, and I blurted out an incident when I was sent a psychology appointment when I in fact had dislocated knee cartilages. I was trying to say that I was afraid no one would believe me again, but I was incoherent. She went to speak to another doctor, and came back with him saying that he was the registrar. I again tried to explain the symptoms, but he said that I should wait to see the neurologist first before coming to cardiology again, because the problem might be connected to my existing illness. Consequently, the registrar said he would see me again in 4-6 months.
He left the room and I was flabbergasted. I said to the doctor ‘you do realise that I’ve had to use my spray 50 times in the space of 4 days’, she was visibly shocked. She admitted that when she had listened to my heart, there was a slight murmur. I asked her what I was to do next. She told me to keep taking the spray IF I THOUGHT IT WORKED; again I was shocked at this: IF I THOUGHT IT WORKED?! It DOES work!! I asked her at what point should I call an ambulance; she said that if I’d used the spray 3 times and it still hadn’t stopped the attack, I was to call one then.I had the distinct feeling – just as I had expected – that I wasn’t believed. I was so annoyed with myself for getting upset too because from past experience, doctors lean towards a psychological cause for an illness, which of course it could be as I’ve had sharp chest pain when I was depressed, but I knew in this instance that it was nothing to do with depression; the sensation was completely different.
I’ve been through this before as I’ve said. Doctors staring blankly at me when I’m explaining my symptoms to them, as if they’d never heard of the symptoms prior to that. Don’t get me wrong, I love the NHS and I admire most doctors and nurses, but it was my G.P. – after 20 years – who finally picked up that I was experiencing myoclonic jerking. When I explained this to a consultant 5 years ago, I received this blank stare again, as if he’d never heard of people jerking! It’s a classic symptom of a neurological problem! I just find it incredulous that I’m never taken seriously, and I knew in this case, that this is what had taken place.
I didn’t have a bad week after that, then I contracted another virus, and the attacks become really severe again. I asked the surgery if I could speak urgently to a nurse, and she called me back early afternoon. I explained the frequency of the attacks and asked her if it was normal; she said it definitely wasn’t, and I was to come into the surgery first thing in the morning.
My G.P. was very angry; she couldn’t understand why I hadn’t been offered a scan at the hospital there and then, or why I hadn’t been given the appropriate medication, which was asprin, a beta blocker, and an oral nitrate, so she gave me a prescription for that, and emailed the cardiac department.
I finally had a scan booked for the 28th September, a scan that I should have had 6 weeks before. My symptoms hadn’t been too bad; the medication seemed to help, but I’d still have the odd nights when I would have severe attacks.
I went for my scan, which was very painful (I realise now that I should have had NO pain during the procedure; yet again rough-handed nurses who think that they can just hurt you). 10 days later I had still not heard from the hospital about that test, so I emailed my doctor. She told me to phone them to ask for the report, and if there would be a follow up appointment.
I left a message for the hospital doctor’s secretary last Thursday, and then again around midday Friday. She finally phoned me Friday afternoon. I asked her to send the report to my doctor, but she said that they don’t do that, the doctor would write to my G.P. I mentioned the follow up appointment, but by the way she was speaking it didn’t seem that there was one; I presumed the scan came back clear, but I knew that there were other tests they could do, and it felt as if they were just giving me the ‘all clear’ now, and I’d be left dreading the next virus I’d catch. I nearly lost my temper at that point. I told her how long I’d been made to wait for the test, how ill I’d been since July, that I could have died. I said ‘forget it, I’ll just phone my doctor’. Then she changed her tune, and said that of course the doctor always liked to do a follow up, and she gave me an appointment for 5 WEEKS TIME!
I had to calm down before I emailed my doctor. I asked her if it was normal for someone with a heart condition to have to keep waiting like this, because I’d then have to wait a further period for the other tests. I said that I’m obviously concerned because I could actually drop dead at any moment!
Last Friday I had continual attacks through the night again; most likely due to the anxiety and anger I felt, although I had tried to keep calm about it. I feel very let down again. I know it’s no excuse, but 20 years ago when I started to become ill, I didn’t smoke and I hardly drank. After 5 years of getting nowhere however, I started again. I had cut down my cigarettes just prior to my first cardiac appointment, but after feeling that I’m being overlooked again, I’m smoking like a chimney. I have to give up before I next see my G.P. though, she is really needling me now about it, and I don’t want to disappoint her.
That’s it then, I have to wait another 5 weeks for things that the doctors should have dealt with in July/August. I just can’t believe that only my G.P. takes this seriously. I shouldn’t be surprised due to what I’ve had to face these last 20 years. For goodness sake though, it’s not like I have a broken leg; you can live minus the use of a leg for a while, but not without a heart.