Wednesday 9 August 2017

Appointment Letter for MRI


Today I received my appointment letter for my second MRI which is in two days! The nurse I saw when I went to a&e must have spoken to the MRI department to speed up my MRI! I've never been to Rugby St Cross Hospital before so will have to pop it on to my satnav and hope for the best!

back pain  back pain sucks  bulging disc  chronic back pain  chronic pain  chronic pain life  chronic pain meds  degenerative disc disease  lower back pain  sciatica pain  sciatica sucks  spoonie  spoonie blogger  spine pain warrior

Thursday 3 August 2017

My Trip to A&E


I had to go to a&e this afternoon because the pain was unbearable, it was 15 out of 10. I've got a weird sensation in my back, down my left leg and foot that feels like when you have restless legs. This frightened me as well because I know something has changed in my back and didn't know how serious it was going to be with the pain and new sensation!

When I got to a&e, I drove which was wrong I know, I booked in and took a seat expecting to wait hours to see the triage nurse let alone a doctor. After about 20 minutes I was called in to triage, they took my blood pressure and did a blood sugar test. We spoke about my back and the pain then was sent back to the waiting room. I'd just got my bum back on a chair when they called me back in to triage saying they forgot a test.

When I got into the room they asked if it was ok to take my BP again. I just thought the nurse had forgotten to write something down. Then the nurse asked if I'm normally tachycardic, I said no, not really understanding other than it's something to do with my heart. My heart is fine. She advised that my heart rate was really fast, BP and respiratory rate were high and that they wanted me to have an ECG. They got me onto a bed and took me straight through to cubicles because they saw how much pain I was in. I had 2 ECG's which was a nightmare because my back and leg muscles were really tense from the pain. It took me ages to relax my legs enough for the machine to work. The ECG nurse was really patient and kept telling me to take my time there was no rush.

Eventually everything settled and the nurse said it was clearly caused by how much pain I was in. They advised that even though I'm in agony, until my entire lower leg & foot go completely numb or I become incontinent I'm not eligible for emergency surgery and they can only manage the pain. They've given me crutches to keep me balanced and help spread my weight a bit when walking. They've also given me Oramorph for prn use too. They advised the weird sensation is another result of the bulging disc pressing on my nerves.

My experience of a&e was really positive. People are quick to criticise but the nurses that dealt with me were extremely patient even though they were very busy. I know they could only help a little bit but that's due to the processes of the Neurology Department.

back pain  back pain sucks  bulging disc  chronic back pain  chronic pain  chronic pain life  chronic pain meds  degenerative disc disease  lower back pain  sciatica pain  sciatica sucks  spoonie  spoonie blogger  spine pain warrior

Precipice... *Long Post*



My mood has been like a rollercoaster the last couple of weeks. It's beginning to sink in that my back is knackered and in the words of my consultant "there is no cure." As I sit here with an angry back I can't help thinking "is this it?" "How much worse will it get?" "Will surgery make it worse?" I also wonder "will surgery fix it?" "Afterwards will it be as though my back was never bad?"

I feel like I'm on the precipice of permanent disability. It is a cold, scary and lonely feeling. No matter how much I speak to others who have been in my position it doesn't make this feeling any better. I think it is something that will go away if the surgery successfully stops my pain or that I need to work through if it doesn't. The main factor in successfully stopping the pain is the amount of time I have to wait for my surgery. The more and the disc presses on the nerves, the increased chance of permanent nerve damage and the less chance the surgery will stop the pain. The NHS is renowned for it's terrible waiting times. I'm not even sure I'll have my surgery before new year...

I can't help but constantly worry as the pain has been getting worse. I have to admit that I do push my back too much sometimes but I really struggle to not do too much. I still think the pain should not be increasing at this rate. I went to see my GP about the increasing pain, I advised that we increase the painkillers and the pain then increases too. I made it clear that I was worried and wanted to know what was causing the rapid increase. She then read the letter from my consultant and said that I should go to A&E as that's what it says to do on the letter! I pointed out that there has been an advertising campaign for the last few years trying to discourage people who do not need emergency treatment from going to A&E. She agreed that this was not an emergency. She looked a little lost! I then said maybe we could find out what may be causing the increase in pain. She asked how!! I then suggested another MRI to which she agreed vehemently! This is not the first time I've had to suggest a plan of action to a GP. It pisses me off. They're the professionals and should be telling me my options. I am now waiting for a MRI and for my surgery.

I've also lost my job and am now claiming ESA. I am in the process of claiming PIP too. I'm also waiting for a date for a visit from an Occupational Therapist to see what equipment I need to help me around the house. I'm struggling with showering even though I have the shower seat because of having to get in and out of the bath as it is an over bath shower. I'm struggling to get off the toilet. The stairs are getting more difficult and sometimes I am unable to get up them because of the pain. Standing for too long is painful so cooking and preparing food etc is near impossible. I am unable bend down to the oven, lower cupboards or the lower freezer shelves. I am unable to walk my dogs or bend down to fuss them. I am unable to dress/undress my lower half. I am unable to pick up things that I drop. I lose my balance at times, even when I'm stood still. When I walk without a stick it looks like I've shit myself. It's frustrating and debilitating! My life seems to be coming to a screeching & painful halt!

I go to bed in pain and wake up in more pain. I am unable to sit propped up in bed due to the pain. I am unable to sleep in my bed because I roll onto my back in my sleep. The U pillow and a barricade of pillows doesn't stop it from happening. When I wake up on my back it is pure agony. The last time it happened (a week ago) it hurt so much I could barely breath. It took me nearly 5 minutes to get my knees up and log roll into a sitting position on the edge of the bed. Both of my hips were hurting and the pain in my left leg and foot was awful. It took several hours for it to settle to a manageable level and over 2 days to settle completely. I'm now sleeping on the sofa with my back up against the back of the sofa or on the edge depending on which side I'm laying on. The last 2 mornings I have woken up with bad back and leg pain. I dread laying down to go to sleep.

I try my hardest to be strong and be positive. I'm sorry for the long whingy post. I suppose not all posts about chronic pain are going to be positive and uplifting...

back pain  back pain sucks  bulging disc  chronic back pain  chronic pain  chronic pain life  chronic pain meds  degenerative disc disease  lower back pain  sciatica pain  sciatica sucks  spoonie  spoonie blogger  spine pain warrior 

Thursday 20 July 2017

RIP Chester Bennington

BBC News - Chester Bennington: Linkin Park vocalist 'took his own life' http://www.bbc.co.uk/news/world-us-canada-40676530 
RIP Chester 😢 x 




Another extremely talented person gone too soon. Thank you for Hybrid Theory. You and Linkin Park were a huge part of my life in the late 90's and early 00's. I will cherish the memory of falling off the bar at one of my favourite rock clubs whilst dancing to In The End x ‬


#rip  #chester bennington  #linkin park  #death of a legend

Monday 17 July 2017

Morphine Patches Pain Relief


This afternoon I went back to the doctors as I am still in a lot of pain. The pain has changed in both my back, hips and leg. It's a bit difficult to explain but I know that something is different on my back. I can almost feel it as well as sense it. I explained this to my GP who then read the letter from the Consultant to them and immediately said "this letter says go to A&E". I explained that I didn't want to waste their time as there is nothing they can do in A&E other than give me painkillers then send me home and that I will not be eligible for emergency surgery until I become incontinent or paralysed.

She reluctantly admitted that I was right, I think she knew that I knew that she was trying to fob me off. She asked me what I wanted her to do! This really pissed me off! Who is the GP? Who has the medical degree and training?! Trying to stay calm, which is extremely difficult when you're in a huge amount of pain, I asked for different or more painkillers and if she would refer me for another MRI as I know something is very different in my spine. After a few seconds of mulling it over she agreed. She then looked at my current painkillers and proceeded to ask who had put me on both Co-Codamol and Tramadol as the Co-Codamol would be useless next to the Tramadol. I told her that she was the one that prescribed them. She completely denied that it was her and tried to say it was a locum GP.

At this point I'd lost the will to live so asked what she could do with my painkillers. She took me off the Co-Codamol and prescribed Butrans 5mcg per hour Morphine patches. Then she added my MRI referral to her to do list. Then she proceeded to show me how long her list was and tell me how busy she is with them being short of GP's. I bit my tongue as I really wanted to remind her that it's her and her husbands practice so hire another GP or 2! She advised she couldn't confirm when she'd be able to send the referral. I just thanked her through gritted teeth and left.

Every visit to see my GPs feels like a battle. I usually leave feeling exhausted, disappointed and upset. I'm stuck with this practice due to it's location. As the saying goes I've just got to...




back pain  back pain sucks  bulging disc  chronic back pain  chronic pain  chronic pain life  chronic pain meds  degenerative disc disease  lower back pain  sciatica pain  sciatica sucks  spoonie  spoonie blogger  spine pain warrior

Friday 14 July 2017

Coping & Buying Equipment

At first I thought I was coping with the prognosis of living with chronic back pain. That I'm likely to need a series of surgeries. I pray that I hit the 5 - 10% chance of success. That I'll be back to "normal" afterwards as though it's just a hiccup, a blip, a little painful diversion in my journey through this chaotic & unreasonable rollercoaster called life. Deep down I know, I feel from the bottom of my lumbar spine that it's not going to be that easy. Life isn't easy, if it was we'd all be robots. Boring robots. The downs & hardships are what makes the ups & good times as good as they are. My life has changed so much since February already. Everyday is a fight to stay awake due to lack of sleep and the cocktail of painkillers I'm taking. I've had to buy a body pillow to help me sleep sat up due to the pain. I've had to buy a walking stick because I'm struggling to walk. Yesterday I had to buy a bath/shower stool because it's too painful to sit or lie down in the bath and I can't stand for too long in the shower.

Needing to buy equipment to do everyday things is starting to get to me. It's frustrating and if I'm honest it's denting my pride. I know that pride comes before a fall but I can't help it. I am trying really hard to get on with it, to soldier on, to hold my head up and face it with a stiff upper lip but I'm starting to crack. I suppose being constantly tired, in pain and nervous of the impending surgery isn't helping. I'm only 37, have not even hit middle aged yet and I'm buying stuff my Nana needed when she was in her 70's & 80's. I'm maxed out on the strongest painkillers that I can function on. The next step is Oramorph etc which will affect my functionality. I don't want that so suffer more than I need to I suppose. The consultant's words keep swimming around my head "no-one can give you a new back, discs or nerves", "surgery will be a repair not a cure" & "if the nerves aren't permanently damaged the surgery will help with the nerve pain but will not help with the back pain." He made it very clear that paralysis is eventual without surgery and a risk of surgery. Talk about being stuck between a rock and a hard place. It's a no brainer. Surgery is my only option. I still face a life long disability and that I will need to learn to deal with. Especially before the cracks become crevasses.


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Monday 10 July 2017

All About the Dogs!


When you feel lousy, puppy therapy is indicated.
—Sara Paretsky

On Saturday my housemate and I took 3 of our girls, Macey and her daughters Megan and Harper, to the Sound Hounds Dog Show. We only entered our in the Prettiest Bitch class. We didn't win, my girls are stunning! It was a lovely few hours with a couple of friends and lots of dogs. I absolutely love dogs, they are the best therapy! Big dogs, little dogs, old dogs and little puppies!

Not only was I accompanied by my housemate, 2 friends and our combined 12 Cavalier King Charles Spaniels between us but the sun was out too! We caught up with people and dogs we met in training classes and on group walks. The weather has been very hot, we seem to be having a proper summer this year. The sunshine, friendly banter and cuddles from loads of dogs helped me feel a bit better. The best thing about not being able to stand or walk for long is those with several dogs trusted me to look after their other dogs if they had entered only 1 into a class. Dogs have an amazing way of helping you forget your troubles and will listen until you work your troubles out.


Me with Macey (back), Megan & Harper.


After the dogs show we went to our friends house for a cuppa and a chat. We sat in the garden, with dogs sprawled everywhere sleeping off the excitement of the dog show, drinking tea/coffee and chatting.

Although I was in pain the dogs and chatting with my friends seemed to dull it. I wish I could do it everyday!

Sunday was chill out, pyjama day. The girls were still shattered after an exciting Saturday and they rest if the pack were too tired to do anything but lounge around. We think they may have had a little party while we were out!

img_1847
Harper took herself off to her crate yesterday for a snooze.

Overall I had a fab weekend. I went to bed last night tired, in pain but most of all grateful for good friends and mortal angels, otherwise known as dogs x

Thank you for taking the time to read my post. 

Have pets helped you? If so, how?

#spine pain warrior  #sciatic pain  #sciatica sucks  #sciatica  #sciatic discomfort  #sciatic nerve  #nerve pain  #back pain  #lower back pain  #chronic pain  #chronic back pain  #bulging disc  #degenerated disc  #spoonie

Friday 7 July 2017

Heroes, an Invaluable Resource



***Long Post - Tea & Cake Required***

When I was a child I had no idea my mum was disabled. She was just my Mum, I knew no different. As I got older myself and my school friends began to notice she was different. I endured a little while of the kids calling my mum a spastic, it really upset me. One day I told Mum and she said "laugh with them and join in, they'll soon get bored and move on." I told Mum that I couldn't call her names. She said I'd only need to do it once or twice. She was right. When I became a teenager I gradually found out all about Mum's disabilities and she told me "if you don't laugh you'll cry." This has stuck with me for my entire life.

In 1971 when Mum was 21 she, and a couple of friends, got jobs has maids in hotels in Bournemouth. At the time my Mum was also applying to emigrate to Canada. She had a job lined up and was waiting for the go ahead from the Canadian Government. One of her friends had brought a scooter and was showing it off to my Mum and others. Mum, being the dare devil she was wanted a go on the scooter even though she had never ridden one before. In the 70's there were no laws for wearing helmets or protective gear on scooters and motorbikes.

Mum had a tootle up the road and on the way back down the scooter stalled whilst she was changing gears. I have no idea what speed she was doing but Mum was flung from the scooter. She bounced off a parked car, was hit by a car travelling in the other direction and finally landed hard on the curb. From witness reports Mum got to her knees, whilst bleeding from her eyes, ears, nose and mouth, and said "what a stupid thing to do" before collapsing. An ambulance was called and she was whisked to hospital. The hospital contacted my Grandparents and told them to get there ASAP as they were not expecting Mum to survive.

Mum was in a coma for 3 months. Doctors kept telling my Grandparents to turn off the life support because even if Mum woke up she would be a "cabbage" (their words! It was the '70s!). My Grandparents flat refused to give up on Mum and told the hospital that she had a strong set of family genes and would be fine. After 3 months Mum began to wake up. Mum was suffering from major physical and head injuries.

Mum's skull was cracked all the way round except for about an inch above her right eye. If that had cracked too the doctors would've been able to lift the top of her skull off! Mum smashed her pelvis, lost all of her teeth and had a huge patch of skin missing from her right arm. I think there were other minor injuries that we haven't been told about.

Over the next couple of years my Uncle taught Mum how to speak, read, write and draw again. He spent all of his spare time helping rehabilitate Mum. Mum was told that she'd never walk again. Mum is a very determined, independent and stubborn woman. She insisted on having therapy to help her try to walk. Mum pushed her bodies bounderies and eventually learned to walk again. Her doctors were amazed. Mum couldn't walk far but she could stand and walk a bit. She had become a walking miracle.

Mum then went to a residential college for the disabled and got her qualification in Book Keeping. Mum returned home and got a book keeping job at a local factory. Her manager used to pick her up and take her home too.

What Mum didn't know was that just as she had her accident she had been given the all clear to go to Canada. Even though Mum's dreams had been torn apart and her life dramatically changed, she was just grateful to be alive. Every time a doctor to her she couldn't do something she tried her hardest to do it and usually succeeded. The hospital doctors told Mum she wouldn't be able to have children.
Mum met my Dad through a disabled club my Dad used to work for. They became best friends and eventually married. Mum was desperate to have children. Mum and Dad spoke to the hospital doctors and they said having children would kill Mum. Then they spoke to the GP who had known Mum since she was a baby. Her GP told her that she can do what she wants and that he believed that she could and would have children.

In 1979 Mum became pregnant with me. The doctors made it clear that her life was priority and if anything was to go wrong they would save her. Mum & Dad believed all would be fine. Apart from me being an awkward baby, lying on nerves, kicking her dinner of her lap and lying with my neck resting on a sharp piece of her damaged pelvis, all was good with the pregnancy. When Mum went into labour, little did she or Dad know that it'd be 36 hours before I was born! When I eventually made my entrance into this world my heart had stop beating and I wasn't breathing. The nurses soon bought me back to life and Mum had overcome another hurdle. Had yet again stuck her fingers up at life and said "look, you can't and won't stop me!"

Mum and Dad bought me home once the doctors were confident that Mum & I were fine. They shortly caught for my brother and he was born 6 weeks premature. He was born 12 days before my 1st birthday! Mum had lost her dream of living in Canada but was living her new dream of raising a family. We were cherished by both Mum & Dad, even though they didn't have much money they both strived to make us as happy as possible. It worked.

in 2002 I got a call from my brother to get to the hospital ASAP. Mum was ill, on deaths door. I got to the hospital and was told by a consultant that her blood pressure was teary 200 over 100-and-something, that her heart and brain could not sustain such high pressure and that she could, probably would, die of a stroke or heart attack at anytime. Despite her condition she was on a bed in the corridor of the A&E department. I understand they were busy but surely they could move her to a private room. I ripped the consultants head off! Shouting "if Mum is that ill why is she on a bed in the corridor where she could be seen by everyone?! Could we not have some privacy at such a heartbreaking time?!" The answer I got was "Sorry, we're overloaded." I walked away as I did not want to be evicted from the hospital for smashing his face in.

The doctors pumped Mum full of various drugs to try to bring her blood pressure down even though they were not entirely convinced it would work. They tried their best and that's what counted. That's what helped Mum to survive with no incident. No stroke, no heart attack! Her blood pressure began to drop, we all cried with relief. Mum wasn't out of the danger zone but she was improving. During the entire episode Mum kept saying she felt fine, wanted a fag and wanted to go home! Mum was in hospital for a couple of weeks and came home with a much better blood pressure reading. It was still high but not life threatening. Recently I took her to hospital because she felt ill. They took her blood pressure and it was perfect. It has taken 15 years and several types of blood pressure tablets but Mum yet again has stuck her fingers up at the grim reaper!

Life threw two massive curve balls at Mum, they should've killed her but she caught both of them and threw them back with such force she has left a wake of people in awe of her strength, determination and success. Mum is my main hero, my inspiration and my life mentor. I love her so much and am grateful for every day she is still with us.

My second hero is my Nana, Mum's Mum. When I was a toddler Nana and Grandad were on holiday. She kept complaining of a terrible headache but refused to go to a doctor and just took painkillers. She soon collapsed and was taken to a local hospital. It turns out that she had 5 burst blood vessels in her brain. To save her they immediately several holes into her skull to relieve the pressure from the build up of blood and to reduce the damage to her brain. My family had been warned that there was minimal chance of survival due to the severity of the bleeds. Their quick actions and Nana's determination to survive worked and within a few weeks Nana was in the clear. The bleeds had stop and the burst veins had been treated. Apparently we went to visit her often, she was worried about our reaction to her shaved head and the dents left by the drilled holes. We didn't take any notice. She was our Nana, no matter how she looked. Within a few months Nana was home and back to normal. She lived until she was 86! She lived for nearly 20 years after the bleeds.

I have strong, strong genes and mindset. This diagnosis of Degenerative Disk Disease will not kill me. My life will change but I'll still be here. I may suffer chronic pain but I'm still alive. I have caught the curve ball and am just building up to throw it back after my surgery. My Mum & Nana taught me that with a lot of determination and hard work we can survive anything. Dig your heels in and don't let life ruin you. I am lucky to have the resources from my heroes to carry me through whatever life throws at me.

back pain  back pain sucks  bulging disc  chronic back pain  chronic pain  chronic pain life  chronic pain meds  degenerative disc disease  lower back pain  sciatica  sciatica pain  sciatica sucks  spoonie  spoonie blogger  spine pain warrior  hero 
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Monday 19 June 2017

Why I Say ‘I’m OK’ Despite Chronic Pain

 


Sunday 18 June 2017

The Consultation...

My housemate came with me to my appointment as although I was ok about it Friday & yesterday, this morning I was a little anxious. We arrive 10 minutes early, we'd barely sat down in the waiting room when I was called through.

I had downloaded a dictaphone app for my phone to record the appointment as I have them memory of a goldfish! I'd like to blame the painkillers but I've always been an "airhead" :-D

I asked the consultant if I could record the appointment and his response was "go ahead dear". He was lovely, very to the point but with a gentle manner. I instantly felt like I could trust him. There just seems to be something about him.
He had read the MRI report I'd emailed to his secretary. The key points he said during the appointment are:

"Nobody can give you a new back, nobody can give you a new disc and nobody can give you a new nerve."

"We can trim the disc to take the pressure off the nerve. It’s a repair not a cure. It carries risks."

"If the pain is getting better then don’t have the surgery, if it isn’t getting better or if it's getting worse then think about having the surgery. Both having or not having the surgery carries the same risk of paralysis due to the pressure on your spinal cord."

"If you are happy to proceed with surgery it will be a L4/L5 decompression surgery and trim the disc. Again it is a repair not cure. Your back will always be problematic. If the nerves are too damaged it will not relieve the pain."

I opted for the surgery. My back is getting worse, I need some relief and it makes sense to try to take the pressure off the nerves. There is a chance surgery will help to relieve the pain. Not having the surgery will leave me in agony.

I am now on his list. I'm not sure how long it will be before my surgery. He gave me the number for his secretary to call a week tomorrow as she's on annual leave. I've got to give her my MRI scan disc. He didn't want to take it in the appointment and I can then discuss getting onto a cancellations list if there is one.

The sooner I get this done the better. In the meantime I need to manage the pain with painkillers.

On an emotional level, I am both relieved and upset. I knew how bad it was but hearing it from a consultant makes it "real". I'm relieved because I know what I'm facing longterm so now I can get my head down and get on with it.

I am extremely lucky to have three close friends who have had similar surgeries and am a member of several support groups on Facebook. Along with family & friends I have plenty of support. For that I will always be grateful.

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