Why My Winter Boy Can’t Hug Me Right Now

My back has ‘gone’ for the millionth time. I am moving, but it is painful. R has just gone to do the rest of the Christmas shopping. My Summer Girl is happily colouring.

My Just 3 Winter Boy is in a happy, lovely, cuddly mood. But, he is not in a still, quiet, calm, cuddly mood, but the type that has him climbing all over me being a cat – he is twisting over my back, hanging off my neck and laying across me – normally it would be wonderful. But, right now I am having to keep asking him to stop and be still, and as he can’t, to sit next to me. He simply won’t stop.

I remind myself that this will not affect him negatively in the long term, but how can it not? How can he possibly understand that sometimes mummy loves snuggles and a little rough and tumble love, but sometimes not? It’s inconsistent. And yes I tell him it is because my back is feeling poorly, but he just does not understand that, or rather, yes he understands I have a painful back, but does not make the connection between that and jumping on me.

And it hurts me so much.

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Living with Pain That Just Won’t Go Away. Part 1

I have just read an article about how chronic pain changes a person. And, once again the tears flow as I write. I have pretty much stopped talking to people in real life about my back pain. People in real life have pretty much stopped asking. I am walking straight and I have medication. Some of that medication even makes me a bit happier as a side effect right?

It reminds me a little of when my mum died a few years ago. After a few weeks/months people stopped asking how I was, because I was over it right? Well, the development of this chronic pain, it’s quite a bit like grieving. The initial shock of it, the raw pain of it is hard to manage but people were there to help me cope in the early days when the pain was visible.  Then followed the process of trying come to terms with it, learning to accept that things are not the same anymore, that an important part of my life has been lost. And in time, that support disappeared as it had all become invisible, and people don’t want to hear it anymore, if it seems ok, best not to ask, or so it seems. I have struggled to keep myself going over the last 10 months, and it is not over, and just like grieving I think I am coping then something reminds me of what I am missing, a little thing that crops up that floors me all over agin. But it has now just conveniently been swept under the carpet of drugs, and my rotten mood and distancing from others is put down to the medication. The medication has changed me, right?

I had almost stopped crying for a while. But then, I read this article that I am going to post, and it is just like I have had a conversation with someone who understands again, someone who knows, who feels it, and who has got it right. It is like I have written bits of it. And it has opened the floodgates again as even though this was not written for me, or about me, and written before I even had chronic pain, it feels like for just a moment, today, someone was listening. Even though they weren’t.

I want to show it to all my friends, my family, my work colleagues, my GP, my husband and make them read it. I want to shout at them ‘you see?! it is not my fault I have changed so much, that I am so irritable and miserable and depressed. How can a stranger understand but not you?’

And the tears are now streaming down my face, and I can’t stop them. And don’t know if I want to stop them right now. I will post the article when I have composed myself.

No Driving!

You know what? I can’t actually write what I think today. Well I can, but it is exceptionally dull. Not witty, or informative. I have tried to write something 3 times. I even posted one of them. Shocking.

There are bigger problems in the world than me not being able to drive the car for a while because of medication side effects. At least I have a car and have a partner who can drive it.

There are bigger problems in the world than numb patches and pins and needles in my leg and being told by my GP that this might now be permanent. And bigger problems as fighting to get my GP to re-refer me to the Spinal Pathway because ‘many people make a decision to accept numb patches, pins and needles over spinal surgey’. At least I am not in horrendous pain any more thanks to being pumped full of drugs. At least I can walk.

There are bigger problems in the world than my boss being a bit shitty with me when I said I was returning on reduced hours, not today, but tomorrow and her making it clear not to expect any Welcome Back banners . At least I have a job. At least I have enough money to pay the bills and take the family on holiday this year.

At least I am alive and relatively well. And my family are well and with me.

Yet somehow, that does not cheer me up.

Thank you runawaycerbera…

I am writing in response to the fabulous post in ‘comments’ by runawaycerbera on my last post ‘my husband stabbed my leg!’ She has spoken about her own experiences with backpain in such detail, I felt my answer to her was so long and in turn detailed that it should be written for people to easily read. Maybe they will be more aware of how serious a lumbar disc prolapse can be, and what backpain and nerve pain might mean long term if we don’t address it, which neither of us knew before.  Luckily in runawaycerbera’s case it was not too late but for many people it is especially if they experience Cauda Equina Syndrome which is a serious form of nerve damage that can leave you with permanent parasthesia if you don’t get it treated straight away. Check out the NHS website for details if you need more info, it is a really helpful site.

I read everything runawaycerbera has said about the debilitating back pain and the fog it creates and it sounds just like me! I had the caudal injection into my epidural region of the lumbar spine in March, to stop sciatic nerve pain, which luckily for me worked, altough for only or two weeks and was very painful for days afterwards but at least it was not excruciating to go in, just a bit humilating with butt in the air (not even a friday ;-). I was told by neurosurgery team this injection is too random and often goes wrong and is rarely accurate enough to do good. Too late after it was done, although the osteo/gp who administered it advised it was 50/50 success. Funnily the numbness and pain I now have down my left leg is different to the pain I had in my right. The pain shifted once I started physio in August (yes it took that long to get a referral to physio) and started the intense exercises recommended by the spinal pathyway physiotherapist. I went from stooping badly and pain in the right leg, to standing straight with intense pain in my buttocks, thigh, hip, leg, foot. The prolapse is central so I suspect it has shifted in it’s prominence/increased it’s prolapse, as does the spinal pathway team. Or maybe another disc has prolapsed, that is quite common once one goes I have heard.

I so hope I don’t suffer as runawaycerbera  has done, with the bladder problems and in agony for so long, but I have had issues with ‘other areas’ that has been ignored and I am not hopeful I will be spared any of the anguish she has experienced. I was told by many people in the last few months, that I should have gone to A&E at christmas and again in June, instead of accepting that any movement would make me cry and that was ok. The emergency GPs felt it was not that bad, but they didn’t physically see me. If/when it happens again (it is very likely I have been told by the spinal pathway team) R and I have agreed, no calling out of hours doctors for more diazepam and extra tramadol or codeine, I will go straight to A&E.

I just feel that as I am walking and not in the serious acute phase, the medical teams seem happy that there is no longstanding damage. I worry that they will wait untll it is too late before it is sorted. It is not healing itself. It is not getting better. I am just managing the pain better by avoiding living my life how I want, and by taking a lot of drugs. I agree with runawaycerbera that I am not sure how much of my tiredness is drug related and how much is that I am so ground down, yes a lot of it is the drugs, but much of it is not. Like she said, I hurt so often, I don’t think I realise how much anymore.

I am very scared that I am never going to be me again, that I am never ever going to see an end, and that even the brief periods of relative pain-free existance is just a short term until it goes again and this is how I am going to live my life, in fear of the most horrendous agony I have ever experiened returning. It is worse than my experiences of childbirth and I say that having given birth to my son with only entinox as relief and having had a ventouse delivery with my daughter. I simply cannot bear the prospect that my once active life has disappeared forever, that my children see this shell of who I really am, that this is their mother. This is not who I want them to see as their mother, it is not meant to be this way for them.

But runawaycerbera you have given me some encouragement that it won’t be forever, that one day I may find someone will listen and remove the fucking thing. I will, without a doubt being making a trip to A&E at some point in the future. I hope like you, it is not too late when that happens, and the nerves has not been permanently damaged.

ok, that was a lot of me there. an outpouring shall we say! phew. thanks !