ME is Pants!

Hello!

Today is a rant day! I am feeling very depressed and have very painful calves all because I dared to take my dog for a walk not exceeding 30 mins for the last 2 days!

I hate the fact that having ME means that putting the dogs in the car to run on a nearby field is so taxing that I couldn't do it more than once a week so I think lets try and get out for a little walk around the block each day even if it's just for 10 minutes! It's better than what my poor doggy has been getting.

So off we go and the weather is lovely and so we walk a bit further than planned. We had a lovely time and my little doggy was such a good girl and we get home tired but refreshed!

Me and my lovely doggy, Dulcie

The next day I'm a bit tired and rather achy so we don't go so far and again really enjoyed being out in the fresh air which is meant to be good for ME and depression!

But by evening my calves were really hurting! they hurt every time I moved throughout the night and painkillers and ibugel aren't helping!Talking of which I ought to take some more! I consult my ME friends with more experience of dealing with this damn illness and the general feeling is that I am overdoing it already!! Aaaarrrrggghhh!!!!!!!!!! I am so frustrated!!

The sun is shining and I want to be out in it! Instead I am lying on my bed watching tv and pouring all my frustrations out on my computer! Even my doggy has deserted me for the fresh air and lying at the gate watching the world go by!

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!

Living with M.E./C.F.S.

Kay Gilderdale was accused of murdering her severely disabled daughter. Lynn, who had lived ME most of her life, was bedridden and in constant pain. With the trial now over and Kay cleared of blame I have found myself asking how much people really understand what living with ME is really like? So last night I had to get up and write down my thoughts on living with ME. I want you to know that I do not consider myself to have Severe ME, in fact I would say it was moderate. These issues apply to most ME sufferers at some point during their fight with this debilitating illness.

So I would like to ask you a couple of questions.

Do you have a friend or family member with ME? Do you understand how ME affects them every day? Do you know that there are some things that they may be reluctant to admit for fear you might think less of them?

Things like a 15 minute shower is so exhausting that they may not manage it more than once or twice a week?

Did you know....

That food shopping or meeting a friend for coffee has such after effects that those might be the only times they leave the house that week?

That housework has to take a back seat as to do it would make them too ill to manage the rest of the things that need doing like making a meal, also something that is a big job and very tiring?

That hobbies have to be put aside and reading can become impossible?

That owning and walking a dog becomes a burden despite the fact that their very presence brings joy to your life?

That they can be utterly exhausted but unable to sleep?

That every activity or invitation to even the most special and important events have to be assessed based on how ill they will be afterwards and how many have to be turned down because they are not well enough to make it, often at the last minute?

That plans for the future are practically impossible and yet without them life is barely worth living?

That even writing this has made my wrists and hands hurt?

Did you know all this or has this been news to you? Has it helped your view of your family member, friend or colleague with a new understanding of what they are fighting? Maybe you now have a greater admiration of them and how much they still manage to achieve? I have several friends with ME and one who has it severely and is wheelchair bound but I have to say I have great admiration for all of them and how they are able to continue fighting this disease with a smile on their face and a positive attitude!

I hope you not only read this but you will pass this onto your friends so they too will understand a little more about ME. This is a condition that is poorly understood in the medical profession and less understood by the public who question if it is even real! Help me to change their minds. Please pass this on!

Thank you for taking the time to read this

Teri