Being Diagnosed With M.E

Continuing With M.E Blog

As you may or may not know I live with a chronic illness called M.E. It has been part of my life for around 4 years now. Something I want to do is to raise awareness about this illness so today I am going to share my story about how I got diagnosed with M.E. My memory from that time isn’t the best and I can’t remember when or how a lot of things happened but I am going to try my best to remember. I also have a day planner from 2013 that I will use to help me.

How it started.

The moment it all started was when I came down with a common cold. I don’t remember it being anything like a flu but just a cold. It was back in 2012 but exactly when I can’t remember. After catching that cold I never really recovered fully and started to get worse with other symptoms coming on.

What I was doing at the time.

I was working a lot when I got sick as I hadn’t long finished school. In my planner for 2013 I can see that I was working every afternoon during the week from the start of the year and I think that I was also doing the same in 2012 from about the middle of the year. I also picked up more work in the mornings and both of these jobs were working with children. I had a few other hours a week that I worked but I wasn’t working what I would call full time and I had gaps in between each job.

The process.

So as I mentioned above I came down with a cold and never really recovered from it. I think I had seen my doctor about it but can’t remember when or what he said. I do remember booking an appointment to see my doctor and my normal doctor was away so I went to see another one in the same building. He said that I had a sinus infection and gave me some antibiotics for that. I was confused though as I didn’t think I had a sinus infection. The antibiotics didn’t work and I was soon back at the doctors after they had run out. Every other appointment was with my normal doctor. It seemed like every time I went to the doctor there would be a new symptom that I would mention or one that was affecting me more than the others. I had blood tests taken to check for what it could be but everything came back fine. My doctor diagnosed me with post viral fatigue which usually lasts for about 3 to 6 months I think. After the 6 months things were still the same and my blood tests still showed up as being fine. Though it did show that at some stage I had had Glandular Fever but that it wasn’t active(?) now. I was then diagnosed with Chronic Fatigue Syndrome or as I say here M.E. There is two names for the same illness. They can’t do a test for it and because my tests for everything else came back fine and the fatigue had stayed the same for more than 6 months that is how they were able to diagnose it. They have to rule out everything else. I was referred to a medical specialist but because they couldn’t see me within the allotted time they referred me back to my GP. My doctor has always been good and I think I got lucky as I know many doctors aren’t very helpful when it comes to M.E. I think a lot of that is due to the fact that they still don’t know much about M.E and what causes it.

I remember still trying to work through it all. I would go to work in the morning and come home and crash. I would fall asleep or feel really sick and then have to be woken up to go to my other job in the afternoon. I would usually take the child I looked after for a walk for about an hour which didn’t help but it was something that became expected of me. I eventually had to give that afternoon job up which was around April 2013. I also gave up my morning job a while after that as it was becoming too much. It was something I really enjoyed doing though so it wasn’t an easy decision. I was in a lot of pain at the time though and on top of everything else I knew that for my health I needed to cut back on what I was doing. I have never really had a big social life so it wasn’t like I could cut back on that as parties and nights out have always been pretty non existent anyway.

What’s happening now.

There isn’t really anything that doctors can do to help as there is no cure for M.E. They can prescribe things to help manage different symptoms but can’t do anything to fix it completely. I am on something to help me manage muscle pain and to help me get better sleep and I go to the osteopath regularly. I am also waiting to hear back about seeing a medical specialist to make sure everything has been ruled out and there isn’t something else that may have been missed. I doubt there will be as my doctor was very good but it will be nice for myself to know for sure.

Some people recover after years of suffering but don’t usually go right back to how they were before and it still affects them in different ways. Some things may help some people but then someone else might find that it does nothing to help manage their symptoms. It is a waiting game and over time I have been able to get my symptoms under some control and do a bit more than I could a few years ago.

If you have any questions then please leave them below and I will try to answer them as best as I can either in the comments or as another blog post.

Love, Me

Also if you want to share a link to one of your posts please check out my community page here.

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19 thoughts on “Being Diagnosed With M.E

      • Tracey says:

        My best friend’s sister is an advocate of Lymes testing. She was misdiagnosed for years and one of her symptoms was chronic fatigue. It’s a simple test but for some reason doctors like to say, “we don’t have Lymes around here”, and they don’t test for it.
        For my friend, she thought she had chronic fatigue, fibromyalgia and a bunch of other debilitating illnesses. It was Lymes.
        So now I just tell everyone, “test for Lymes too!” 😉

        Like

  1. Renee says:

    I have heard of this, but of course like most people don’t know much about it. You are very brave to share your story with others. Maybe someone else will be able to get the help he or she needs by reading your blog. Best wishes!

    Liked by 1 person

      • Patrick says:

        Given that we suffer the same thing, that’s not entirely surprising. At least in some ways… I’m still at least a bit convinced it’s used as an umbrella term for several things in a “there’s definitely something wrong, but we don’t know what it is” type way.

        I have several friends ostensibly with the same thing who’ve had very different onset experiences.

        Liked by 1 person

  2. Closingwinter says:

    My boyfriend and I are fighting to get him diagnosed at the moment. All the tests have come back clear and he has most, if not all, the symptoms! We’ve got an appointment with an M.E clinic in a couple of weeks, so we’re looking forward to see what they say.
    Thanks for sharing your story 😊 x

    Liked by 1 person

  3. kirstwrites says:

    Sounds really similar to my husband’s onset of ME – a bad cold/ virus, antibiotics/ a test showing some evidence of glandular fever. Like you, he has gradually improved over the years but still very up and down. At the moment he’s experimenting with his diet, having been reading about candida. He’s cut out a lot of sugar and carbs, and it seems to be helping, although it’s a pretty dull diet to follow! Have you ever tried anything like that?

    Liked by 1 person

    • Continuing with M.E says:

      I did try a strict diet that was mostly lean meat and vegetables. With a couple of pieces of fruit a day. No sugar or carbs. For me I didn’t notice any real change and it was at a time I was at my worse. Perhaps it was the timing. Glad to hear your husband as found something to help him.

      Like

  4. Chronically invisible says:

    Great post! So many of us have similar journeys. My new favourite saying is “trying to find a balance between acceptance and hope.”

    Like

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