I Told You I was Ill

‘I told you I was ill’ is the famous epitath of Spike Milligan who died at the age of 83 in February 2002.

Listening to some women talk in the hospital yesterday brought it home to me how this epitath could be the serious comment of so many under healthcare at the moment.

It’s not unusual for me to hear tales of people, all over the world, who have been ill for many years before getting a diagnosis or treatment. So many get told that the tests are not showing anything and begin to believe their symptoms are all in their head.

Hypochondriasis or hypochondria is a condition in which a person is excessively and unduly worried about having a serious illness.

But I really Am Ill.

I always considered that my diagnosis came quite quickly. I went into hospital with severe pins and needles and eventually paralysis. Then I had a full MRI and was sent home with a diagnosis of Transverse Myelitis. A condition where your own body attacks the spinal cord. I was told I would recover in six to eight weeks. Eight months later when I hadn’t recovered more tests were done and my diagnosis was changed to Stiff Person Syndrome with PERM. I had the results from the tests in the post in October 2016 and they were negative. But when I saw my consultant the following January he said that other anti-bodies had been found, glycine receptor anti-bodies. And so my diagnosis was given.

But was My Diagnosis Really that Quick?

I am not an hypochondriac and the only time I ever really complained about anything medical was during my pregnancies. I was always terrified for my babies, not for me. It was worse with my older pregnancies, especially after my miscarriage. I imagined everything that could go wrong would go wrong. I ‘did’ over react sometimes.

However, with hindsight, I know that I was showing symptoms of my condition at least five years before my diagnosis. Pins and needles that took forever to ease off, weekness in muscles, pain, cramps etc. The first time I visited the GP I had a pain in my side which kept re-occuring. I had ultrasound scans but nothing was found. I even went to A&E once the pain was so bad, but they gave me a shot of morphine which made me feel better (And happier/higher!) and sent me home. The pain came back as soon as the morphine wore off, but I’d felt humiliated at the hospital, like the pain wasn’t taken seriously.

Then Things Got Worse

One night, 3 months before my hospitalisation. I had my first SPS attack. At the time I had no idea what was happening. While I was in bed and my body was paralysed all down the left side. I couldn’t move or speak. There was no way I could call to my family for help. I was alone and terrified, not knowing what was going on. I went to the GP and told her what had happened and she scolded me for not calling an ambulance. But how could I, I couldn’t even call my son in the next bedroom.

My GP had believed that I’d had a T.I.A or mini stroke and requested a CT scan at the hospital. I never had that scan, the next time I was in hospital was when I had my major attack and I had a full MRI instead. (or my 100 minutes of hell as I refer to it.) I do not have any issues with my brain.

My medication prevents me from having such severe attacks now, but if I’m honest, I’ve felt just as bad as I did that day I was admitted. There’s no point in seeking help though because it’s just my condition and I have to deal with it.

Why Does it Take so Long?

There are many reasons why it takes so long for someone to get a diagnosis for something not common or apparant. There are tests for things like meningitis, sepsis, cancer and many other common conditions. But, they are only carried out if really necessary, for cost and health reasons. If your condition is rare you might never be offered any tests at all.

A hospital will have to be quite certain that it is necessary for you to have an xray, CT scan or MRI before carrying one out, and sometimes these are the only ways they can see what’s wrong.

Most of the people on the day ward where I go have Multiple Sclerosis. You would think that this is quite a common condition and that it would be diagnosed quite easily. The truth is that symptoms can creep up slowly and not give the doctors enough reason to carry out the necessary tests to find out it is MS and sufferers can have the condition for many years before finding out.

What If You Are Ill?

Bascially, if your heartbeat is okay, your blood pressure within the limits and your temperature is fine then you are not ill. That’s what I have learnt. It’s the basic SATS and they do them first, if you pass the tests you are okay and wait for someone to see if there is anything else wrong. And waiting can mean waiting for a very long time.

I’ve heard so many patients talk about being made to feel like hyperchondriacs or even that their ailments are all psychosomatic. (In their heads!) It’s disheartening to hear of how people have suffered because no doctor has taken them seriously.

A&E departments are too busy and the Doctors there are rushed. Every one of my experiences there has been quite negative. I was admitted once, and almost admitted a second time with pneumonia. The choice I was given was that I could have had the anti-biotics adminsitered by IV or take the pills home. I decided to go home. The other times I’ve been dismissed without help because it’s my SPS causing the problem and they can’t do anything for me.

I see a cardiologist regularly, but he can’t find anything actually wrong with my heart. It’s just my SPS causing it to spasm. One day it may cause it to stop, but there is nothing they can do until then. I don’t have a ‘normal’ heart condition.

I see my neurologist who asks how I’m doing and I say ‘crap.’ And he says ‘ok, see you next time.’

The Future

The future is bleak. They have promised to pump more money into the NHS but it won’t help unless they get a lot more doctors and do a lot more research. We are so lucky to have such a brilliant resource, and despite my complaining, I have nothing but respect for anyone who works for the NHS. But, it’s stretched and needs so much more to make it work.

My Father-in-law was sent home with a really bad chest because they decided he needed a CT scan rather than an Xray which the GP had sent him for. They couldn’t arrange the CT scan the same day so they sent him home. And he died.

People slip through the nets all the time. You have to be really sick to be taken seriously. There are so many people who feel ill, that are sent away from hospital, and don’t go back because they feel like they have wasted time. Me included. Maybe if I’d pressed on about feeling ill for all those years then I’d still be walking somehow now? Maybe I could have had the treatment before my spine was damaged?

It’s too late for me, but I wanted to write this because if there is someone out there reading who feels that they are not being taken seriously. Please keep trying. I hope someone will listen to you. Even if it’s ‘all in your head’ you can get help, you deserve help. Help is there, but sometimes you have to fight for it.