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Saturday, 6 March 2010

When M.E. Gets in the Way

Well today my local ME group that meets once a month is meeting today. For the first time since I started going they are having a meeting where people can share how they are doing and if they have tried any alternative therapies that have worked for them. It would have been great and I'm sure that the group will find it very helpful in a deeply emotional way! There is nothing like talking to people who totally understand how you are feeling from a place of experience especially when it is exhausting having to explain how you're feeling and why!

And I can't go!

This is the reality of having ME. You can't even access things you need to access because events have stripped you of your energy! As has happened to me through the events of the last 48 hours!

It all started by a filling falling out and a visit to the emergency dentist. Now I am a dentist phobic of massive proportions and have all my treatment under sedation. So when I went I wasn't expecting to have any treatment and to have another appointment scheduled. So it was a shock and very upsetting to be faced with an extraction under local anaesthetic or days or weeks of pain while I find an NHS dentist and be referred for sedation! Well I couldn't cope with another night of pain so with tearful trepidation I agreed to have the tooth out.

My Dad was with me and came to hold my hand through the injection, ooh how I hate injections in my mouth! Injection over I now had to wait for it to take effect. Dad went to sit down again because he wasn't feeling well. You might think he was just squeamish and feeling faint but he has a rare heart condition that comes on suddenly and it was doing it now in the middle of my tooth extraction! My mouth was now numb enough to take out my tooth and Dad came to hold my hand again but couldn't stay. In the middle of my tooth coming out he is now feeling really ill and the dental team have divided attentions as they are trying to see if my dad is ok! Well my dad hates hospitals and suddenly he says he thinks he needs an ambulance! Ok so I'm now toothless and very worried about my dad. He is very pale and pasty! The dental staff are getting out oxygen and defibrillator (which he won't need) and unpacking all the bits so it's ready if needed while I have a pack in my mouth to stop the bleeding! Then the dental nurse accidentally presses a button on the defibrillator and it starts talking very loudly about stripping the patients clothes off before launching into instructions on how to use it! It made us laugh as she quickly whisks the machine off down the hall still loudly instructing her how to revive the patient! Dad is beginning to look and feel better as is usual with these attacks and then the ambulance arrives. They talk to him about the medication he's taken and how's he's feeling while I'm shooed out of the room for no real reason which was a shame as I held an important piece of information but thats ok cos I can impart that later in the ambulance. Based on the fact that I've had a tooth out and probably a bit shocked because of Dads collapse it is agreed I'll abandon the car, go in the ambulance and come back for the car tomorrow.

So in the ambulance dad is talking about how he didn't get any warning and had only taken 3 tablets (to reduce his blood pressure) when I said my bit. "you did get warning dad. You took a tablet at 6.30!" He had forgotten and that meant that he had taken too many tablets which explains why his blood pressure was through the floor! The ambulance man explained that he would only ever administer half that while dad had been told he could take 3 he had actually taken 4! It was very funny, you should have seen the twinkle in the ambulance mans eyes every time he recounted to the necessary member of staff that dad had taken FOUR tablets!

Well we arrived at A&E at 7.45 and had to wait in the corridor for a while before getting seen by the nurse who ran the usual tests ECG, Blood sugar level, blood pressure which is, by now, looking more normal. We are expecting that the dr will look at the ECG and then sign him off and we'd be home at 9pm or a little after. Well at just before 9pm and then I rang mum to tell her that. I went back to Dad to find they were doing a round of blood tests and would need to take another lot in 90 mins! That is when I wilted and said thats enough for me! Dad bargained with the dr that he would stay for tests if the dr would get me the painkillers that had been promised me, for which I had also had to register as a patient, as the anaesthetic was wearing off and I was beginning to hurt! Tablets were administered then I went and phoned mum again arranging for her to come down by taxi and me to take her taxi home where I finally got to have some dinner! Mum and Dad finally arrived home at 11.30 and we then had a takeaway as neither of them had eaten! By the time I got to bed it was 1am!

The next day we had to get a taxi to take us to the bank to get some money (my MOT had been on thursday and I needed the money to pay for it) and then on to the dentist to pick up the car. I hadn't had breakfast and it was lunchtime so after getting the car we had to drive around to find something to eat, missing the chip shop by just 2 minutes, we eventually found a bakers. We then had to pop in a couple of shops for some necessities then get some petrol and finally home by which time I was very tired.

I was still hopeful that I would make the meeting today but unfortuanately as one of my ME friends warned me the stress of all of this has intensified my tiredness. Well I hope the meeting goes really well and they decide to do it more often. I look forward to hearing all about it all. My day today will mean staying in a bed and resting. And it is from there that I am writing this. Hopefully if I take it easy today and tomorrow I will be well enough to help mum with food shopping on Monday!


  1. Hope you're getting the much needed rest you deserve after your adventures!
    Alice took notes at the meeting that will be in the next newsletter. I just noted down what helped people. I didn't contribute anything as talking exacerbates my cough at the moment which has come back. I will share the notes with you or pop them in an email.

  2. Hi Teri

    My sympathies are with you and being rays carer I can truly agree that anything stressful saps the energy of anyone with M.E he loves to help anybody but just doing the washing up or bringing in washing for me if im at work can totally sap his energy and many a time hes been doing dinner and ive had to take over as simply standing is far too much effort so can totally agree that you should stay in bed and rest, and as the lady before said the notes will be in the next newsletter so you wont miss out. Maybe a good idea is to take a personal recorder so you can play things back if your too tired to read an email, I know this helps sometimes, send my love to all Sonia x


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