Broken Record

That’s what I am beginning to sound like!

When you experience pain it becomes all encompassing. I find I can’t concentrate on anything else as it is so overwhelming. I cried at the Hospice before my reflexology, I cried during it, I cried when my manager visited me and I cried for much of the evening. I am not depressed, just overwhelmed by pain. The worse pain appears to come in the evening and yesterday it seemed to reach it’s peak. Please God, do let it be the peak because it surely can’t get much worse. Last night as I attempted to watch Britain’s Got Talent, Colin rubbed my feet and legs over and over again with cocoa butter and I could see the pain in his eyes as he felt so helpless watching me trying so hard to control the tears flowing and the groans of extreme pain. Dosed up on as much medication I thought I could have without overdosing, Colin eventually called the out of hours Hospice number. He rolled off the list of medication to the nurse, who explained that nerve pain was the hardest pain of all to control. She recommended that we should keep taking the extra Oramorph every hour and to call the doctor for a home visit if things didn’t improve, and also to contact the pain nurse in the morning. I went to bed dosed up and luckily got to sleep pretty quickly and had a relatively undisturbed night.

This morning I feel much better just the usual numbness and pins and needles in my hands and lesser pains in my shoulders, legs and feet. Should I still call the pain nurse? Maybe this is it, I am starting to improve and tonight will be ok, the trouble is I thought the same yesterday morning. I am going to list below the pain medication, (I shall leave the rest out) I am taking, just in case someone with more knowledge of this sort of thing may be able to suggest another drug or an increase here or there. Not that I don’t trust or believe in my excellent pain nurse but you never know someone reading this may have experienced similar pain and had found something that helped them. So here we go…

Gabapentin 900mg 3x/day
Paracetamol 1000mg 4x/day
Amitriptyline 25mg at night
Fentanyl patch 75mg changed every 3 days
Oramorph as required up to 10ml every hour.

Right at the moment I can concentrate on other things in my life, I always was a morning person.

This morning I am looking forward to going to tea with Ed and Betty in the village. Betty makes the best marmalade in the world but never makes nearly enough of it as everyone in the village is after a jar. Later on this afternoon our good friends may pop in. My advice to anyone except for those closest, is not to pop in after about 6pm as the sight of me writhing around groaning, isn’t a pleasant one!

I can’t quite believe its Friday already. I am surprised the hospital hasn’t called to check up on my progress and to see if I am ready for harvesting, perhaps they can guess the answer and will call sometime next week?

I am disappointed that I can’t seem to enjoy my time off sick, maybe you’re not meant to? As a distraction yesterday, before the pain was at its worse, Colin drove me down to the services and I stocked up on competition filled magazines. These provide me with something not too taxing to do in between pain and sleep.

Colin is doing really well with preparing the upstairs room. He has managed to scrape off all the artex from the ceiling and the paper from the walls so I think the next job is putting unibond on the walls. He is then going to put up a dividing wall between the majority of the room and what is now a very small and rather insufficient ensuite. When we have enough money we will add a bathroom with a lovely jacuzzi bath, that is easier for me to get in and out of. The one downstairs is a very old and deep enamel bath which I struggle with at the moment.

I do hope that this neuropathy business is reversible and I will soon return to something that almost resembles my old self, If I can remember what that is!

Enough of my moans and groans. I know that when you are well and pain free it is hard to appreciate it but do try to and enjoy your day.

With much love Deborah x

Scores on the board at this very moment are:

Physical health = 5
Mental health = 5

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5 thoughts on “Broken Record

  1. Deb – so sorry you’re experiencing such intolerable pain. The hospital must have specialists in pain management – maybe it would be an idea, on your next visit, to ask whether you can see someone there. In the meantime, I hope your local team can continue to help you get some relief.

    Much love and thinking of you

    Mo
    x

  2. Dear Deborah…
    I don’t know if you received my recent mail, but having returned from a visit back home, my dad (for different reasons) is experiencing severe pain by the sounds of it just like yours. He’s on as many pain meds as you can imagine and insists that nothing works. He also receives something called ‘Tramadex’ which he has to take in combination of 2 other drugs to make it effective (=i.e. take the edge away, not the full experience of the pain). However, in Israel they also prescribe (through serious autorities consideration) permission for medical cannabis. And he has got those too. This seems to be the top of the top you can get for pain relief. Unfortunately for him, as a non-smoker and one who was never much of a hippie – having tried this for the first time he felt sick and nauseous, and although he has all 3 medical forms of it (fags, powder AND cannabis oil) – he’s not using any of them!!! Crazy or what??? Anyway, those are the ideas I can suggest from just observing him experiencing excruciating pain every day all day unable to find any one way of sitting/ standing or lying down to feel ok, so I can totally empathize. I know this doesn’t help change the situation right now, but maybe something in my words will?! Have you tried anything for the pain with a really good hypnotherapist? xx

    • Thank you Yael and I am really sorry for not as yet replying to your email. I have a dedicated pain nurse and together we have explored the options available. I haven’t tried a hypnotherapist yet but maybe I should. I am seeing theHospise doctor on Monday to discuss accupuncture which I am hoping will help. I am just so very tired now so must sleep again .
      Love Deborah x

  3. So sorry you’re in so much pain, hopefully it has reached it’s peak and will start getting better from today. Try and have a lovely weekend. Take care and enjoy the sunshine. xx 🌺

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