On Chronic Pain and Disability,On Everyday Life

My hospital appointment was cancelled. Now what?

Yes, you read that right, my hospital appointment has been cancelled. It’s not like I haven’t been expecting it. I always plan for the worst; I’d rather be pleasantly surprised than disappointed, but I guess the closer it got, the more I began to hope. The last few days my mobile has received calls from a ‘private’ number but on answering it has disconnected. This is unfortunately not uncommon as the signal in our home is shocking, even using wifi calling. When I finally got a connection, it was the hospital. Clinic’s are being cancelled. Thank you Covid!

Cancelled Hospital Appointments.

I am by no means the only one who will be affected by this, and let’s face it Covid 19 has crapped all over 2020, the lockdown, the loo roll shortage, the idiots who run around saying it isn’t real and no-one is dying from it. I live in the UK and right now we are, I suspect, weeks away from another full lockdown, as the second wave looks set to hit. Now, I am not an expert, but in my opinion, when the country went back to work, and the schools reopened, it seemed inevitable that the virus would spread quickly.

Anyway back to my life. The consultant is going to telephone us and speak to us on that day, but, given the evolving situation I expect to be told that although he recommends surgery they are not doing elective/routine surgeries. Of course, this could be me ‘planning for the worst’ but I was right about the hospital appointment…

How much longer?

Seriously- how much longer? I am so fed up of our lives being controlled by my pain. I shower once or twice a week because to endure it I have to take more morphine, and I am already taking 100mg per day. My GP does not want me to take more unnecessarily, and plans to reduce me back to 80mg per day in a week. Having said that they may reduce it sooner because the appointment is not going ahead. I feel so fed up. I struggle to write – because I don’t want to be the blogger who complains all the time about how much things hurt.

I want to Live.

I want my life back. I want to walk to the shop. See my nieces. Be at my nephew’s Christening. Ride my motorbike. And, let’s be honest, I want to get my kink back on and have sex!

WTF?!

I know I haven’t written much about sex or kink recently, and there is a simple reason for that. We aren’t having/doing any.

You may recall I wrote about how the nerve block had caused me to be in more pain a few weeks ago? What I haven’t written about is the visit to the A&E department at the hospital a few days later, or the one 3 weeks after that. This is partly because I have been too down about the whole thing, but also because I didn’t know if I should share the details. I have decided I am going to.

How do you feel?

One of the things I have to be aware of is that my pain is being caused by a disc bulging and just touching the sciatic nerves. However, your disc moves about and it could bulge further and compress the central space where the spinal cord sits. If this happens, I would be at risk of developing ‘cauda equina’ syndrome which has serious side effects. A couple of weeks ago I got one of these ‘red flag’ symptoms – I lost feeling in between my legs. The medical professionals refer to it as the saddle area (because it is the part of the body that comes into contact with a saddle). So we drove down to the hospital and I was kept in overnight for assessment. They did the usual tests, and because I was unable to perceive surface touch they got a sterile needle and stabbed my anus. I was able to feel this after it had penetrated the skin. Unfortunately, I can’t feel the impact of the cane properly either, so for safety’s sake we are not doing any impact play.

Taking the P!$$.

They also tested my bladder function and it is not emptying properly. It is normal for there to be about 20 to 30 mls of urine left in the bladder after voiding – mine is keeping 250 to 275 mls. Unfortunately touching down there means some leaks out. Not sexy, if you get my drift!!! It has also transpired that sitting or standing too long causes the same and so continence pads have become thicker and we have put the waterproof mat under the sheet on my side of the bed so I can continue to sleep naked.

Nerve damage and the future.

At this moment in time I believe that the nerves are being damaged, bit by bit because the situation isn’t being fixed. I don’t yet know what the Consultant thinks – we plan to ask him, and although a face to face appointment would have been preferable we will have to manage with the telephone appointment.

In the meantime, we can’t have sex and I can’t have a cane session either. I suppose I will have to find a way to hold myself together until the appointment on the 1st of October, and hope that they are still doing the routine surgeries, so I can get back to the business of living my life again.

Sweetgirl x

Sweet Autumn Rose  

 

hospital appointment
Coping with the pain: snuggling in bed after the hospital called.

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31 Comments

  1. Lots of hugs

    1. Thank you x

  2. I can relate with so much you wrote about, so thank you for saying it all.

    I’m also dealing with pain, but mine is on my legs and not my back. I’m sorry you are dealing with that. I’m also taking narcotics that my doctor doesn’t want me to take, and I can’t get her to understand I need something.

    I also have some bladder leaks and my kidneys are not working the way they should. I was taken off of one medication that I depended on for pain. So I need to take a water pill for swelling and maybe help the bladder and kidneys but it hurts to stand up to go and pee. At this point, I kind of envy those who are into diapers. I also sleep nude, because it’s easier to rush to the bathroom without having to fiddle with night clothes.

    I have nerve damage in my legs due to chemotherapy and even 10 years later it’s still bothering me and getting worse. I did find something that helped and that was a small incredibly soft heated electric blanket, it seems to soothe those nerve endings and reduce the pain. It’s working so well, I just ordered a second one to use on my lap and around my legs while I sit at my computer.

    Again, thank you for writing what I’ve been feeling and experiencing.
    Cindi recently posted…Outfit of the Day: Biker GraysMy Profile

    1. Oh Cindy I feel for you! My pain goes down both legs but enough about me!

      I think pain is so difficult for people to understand. One of my friends husband just had a compressed nerve in his mid back and was in and out of hospital. She said she’d never seen him so bad and then suddenly realised I have had that pain for years not days.

      I hope your heat blanket helps, and you find some relief.

      Take care ❤

  3. Huge ((((HUGS)))) hunny xx

    1. Thank you x

      1. Oh you poor thing – more pain & inconveniences, less fun & no improvement in sight. Try to stay positive- but it must be very draining xxx
        Posy recently posted…Down Memory LaneMy Profile

        1. Yes it is x

  4. One of my girlfriends I talk to on a regular basis deals with chronic pain and many other issues daily due to a traumatic eye/head injury she suffered as a child. She’s in the same healthcare system you’re in (she’s from the UK Scotland) and deals with the same problems it makes my blood boil to see you folks not getting the health care you need to SURVIVE and be able to LIVE when there are people out there are getting breast enhancements “for work”.

    1. I all fairness the NHS doesn’t fund breast enhancement surgery only breast reconstructions. I think it’s the same all over at the moment and at least we don’t have to worry about insurance etc. I think the NHS does the best it can with the funds it has. I hope your friend is coping with the pandemic.

  5. I hope you get the help you need soon! ❤️

    1. Thank you, me too

  6. Oh Sweet, I am so sorry to hear this. It made me want to cry for you. Why, why, why do you have to go through this yet again. I have no words! Sending all the hugs you want!
    ~ Marie xox
    Marie Rebelle recently posted…Kink vs Fetish, what are my thoughts?My Profile

    1. Thank you xx

  7. All I can say is I really really hope they will do something for you. This isn’t right
    ML recently posted…My Very Own CollarMy Profile

    1. Thank you x

  8. HeartsHope says:

    Huge hugs! I am so sorry you’ve been going through all this. I thought something had happened when you weren’t writing. 🙁 I wish I could do something to help.

    1. Thank you x

  9. Sweet am thinking of you and sending gentle hugs. I am so cross they cancelled – they have got to prioritise other medical cases apart from covid – makes me livid!
    May More recently posted…Intimacies, trials and tribulations of non-monogamyMy Profile

    1. I’m so sorry to hear this sweet and can totally understand your frustration, I just don’t know what to say other am thinking of you at this time.

      1. Thank you

    2. We do at least get to speak to the consultant, and on the bright side no driving x

  10. Oh, that suscks, and not in a good way 😉

    I hope you get some relief soon

    David

    x

    1. Thank you

  11. Pain takes away our thoughts. It’s hard to work, write, think when something is constantly hurting. Unfortunately, this is familiar to many. Let your pain pass quickly.

    1. Thank you

  12. Honestly I don’t see this as elective surgery. This surgery is critical for your well-being. I’m sending hugs. Stay safe. And I hope they do the surgery soon. No one should suffer this way.
    Collaredmichael recently posted…The Tipping Edge—I Need Longer DaysMy Profile

    1. Thank you I hope so too x

  13. I know I am coming to this very late but am so sorry to hear this. It is truly rubbish and I admire you so for the way you are able to handle things. I wish so hard that things will move forward as I know you have reached about the limit of what you can take. Take care lovey xx

    1. Thank you x

  14. […] climax for me – partly because I can’t feel it – but mostly because it makes my bladder empty …. and that really does kill the sexy for us […]

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