I wish …….an update

I just thought I would update you all after my post on Sunday. I didn’t want you all worrying about me. I have also been struggling to come up with something that I felt interesting enough to post about.

So first the good news….. I won ten pounds on the lottery on Saturday night! Also this morning I opened my emails to find that I had won a ten pound Amazon voucher through a prize draw. I am part of an online survey group called “Inside the Box”. They send through random surveys about television programmes you may or may not watch they take about 5 minutes to complete. Each time you complete a survey you are entered into a prize draw. The top prize is always something really good like a 3D TV and then there are a load of vouchers they give away as well. I have been completing the surveys for around a year and this is the first time I have won a voucher. I will be putting my ten pounds towards a TENS machine as over the last few days I have been borrowing a friends and had good results with it.

I would also like to take the opportunity to thank Rachel for letting me know that a baby Fox is called a Kit. Now that she has said that I remember! Apparently after looking it up today they can also be referred to as Pups and Cubs, both of which completely escaped me on Sunday night! So Thanks Rachel for putting me out of my misery! It was one of the cutest things I have ever seen.

I have also added a few new blogs to my blog lists which are very interesting and well written so if you have a moment please take a look at them.

I would also like to say hello and welcome to those of you who have found me through Twitter. In the last week I have made lots of new contacts in the POTS and EDS world and its been great learning about every ones journeys with their conditions.

I have to also extend a warm welcome to those of you who have found my blog through Facebook and the disability pages I have become involved with in the last few weeks.

Not forgetting my long term followers who have stuck with me through thick and thin. Thank you.

So how am I doing? I would put myself in the OK-ish bracket at the moment. Sunday night was hideous and I didn’t sleep until gone 2am due to not being able to get comfortable due to the back and hip pain. Luckily earlier in the day a friend of ours AC had brought over his TENS machine and it was an absolute god send. I couldn’t believe how well it worked. AC says I can borrow it for as long as I like, which is excellent as this back pain is going to wax and wane now.

 I learnt an important lesson on  Sunday which was  I need to be more proactive taking painkillers and not see it as some sort of weakness if I need to take medication to help me cope. No one has a go at a diabetic for taking insulin, so why all the negative attitudes surrounding painkillers? Its come to the point now where I can no longer grin and bare it. I need painkillers to be able to perform the most basic of tasks as without them I am no longer able to. I am trying to avoid things like morphine as once I get onto those I will eventually get used to them and eventually they will no longer work. I do need help at the moment dealing with breakthrough pain so I have booked a Dr’s appointment for next Monday. Despite my loathing of going anywhere near the medical profession.

The pain has reduced considerably, when I say that it doesn’t mean I am without pain. It means it as a level where I can still function. I can no longer remember a time when something didn’t hurt. Its probably easier for me to list the body parts that don’t. Most days the pain will start either by actually waking me up or a few minutes after waking. I am trying to work out what it is I am doing that is triggering off my back and to see if I can avoid it. However my back can go just sitting on the toilet and I can’t avoid that one! Going upstairs can also make it pop a disc and carrying anything heavier than a cup of tea can also cause problems. So avoiding activities that make it worse is becoming an issue.

Sitting is causing me a considerable amount of pain at the moment, lying down is OK as long as I am in the recovery position with my knee propped up on a pillow. So I am suffering for my art today whilst typing this! Standing is OK but then I have to do battle with my POTS, so its not something I can do much of or for any longer than a few minutes. I can’t go on like this hence my booked visit to see my GP.

So that’s all my news for the moment. I hope to post again later in the week depending on how things go pain wise.

I hope everyone has a good week and I will be back soon!

3 thoughts on “I wish …….an update

  1. Congratulations on the prize!

    I realise I've been rather neglectful of your blog recently and I apologise. I read through your Sunday post and this one, and this stood out for me, 'I learnt an important lesson on Sunday which was I need to be more proactive taking painkillers and not see it as some sort of weakness if I need to take medication to help me cope.'

    I've known what it's like to live with constant pain; I'm sure it was not at the same level as yours, though it would have probably been unbearable for most people. For years I suffered with IBS, and would be in constant pain and discomfort. I was very good at hiding it. I remember one day in particular when for the first time in months I had no symptoms. When they returned the next day I sobbed with frustration and anger that nothing I did seemed to work. As you know, it was only through my own actions – and not the medical professional – that I was able to cure it.

    Here's the thing – it is your body. It is your brain telling you you are in pain. Not the doctors, nurses, or medical staff. You know what you need to help you cope each day and night. Never, ever be ashamed to take medication or painkillers.


  2. Hi Rachel .. Ellie seems to have picked the main point – take your medication as you need it.

    I have a friend who suffers from depression and occasionally she tries to wean herself off it – it's a disaster .. she needs her pills.

    So look after yourself and I do hope you can get some relief .. glad the TENS machine is helping .. cheers Hilary


  3. Hi Hilary and Ellie,

    Yep I do need to get on top of the medication side of things and not wait for it to progress to the point where I can't cope.

    Some of the problem is I struggle to eat before 3pm due to gastroparesis, take today for an example dry heaving until gone 2pm. A lot of my tablets have to be taken with food so its a battle.

    Then I feel like I am too dependent on them and that I should be able to cope without them. The last few weeks have shown me its not the case.

    So I will try to manage things better.

    Rach xx


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