How am I doing…

A lot of people who follow me have been on this journey from almost the very beginning and I realise I haven’t done an update for a long while so I thought I would give you a little update as things aren’t great…

So, 6 years ago, after giving birth to my daughter (this was not the cause of my medical issues) I began experiencing hip pain and numbness in my legs. I could be walking in town and out of nowhere my leg would buckle under me or my hip would ‘click’ and I would be in agony and would have to try and get myself home safely from wherever I was. As the pain increased it would make simple tasks such as standing to cook a lot harder than it should be. After around a year I began speaking to my GP practice about the pain and they shrugged it off prescribing codeine and then morphine but refused to run any tests, request scans or anything so I was living in pain with no route cause nor knowing what was causing it at all. The codeine wasn’t touching the pain at all and when taking Oramorph I was so drained, my migraines got worse, it causes sickness and was making me seriously drowsy.

With the pain increasing and then effecting my daily life I self-referred to the physio department convinced that maybe it was a muscular issue where a few stretches etc. would help. Sitting in the waiting room I felt so sick because I didn’t want it to be something serious and I had an amazing physiotherapist who got me to do a few stretches and moved my legs around a bit and with my mobility being limited by the pain he didn’t want to touch me further without an x-ray. At the time I figured he was just wanting to rule out anything broken or fractured and knowing my body I knew that scan would come back clear. I went back to the physio who explained that he was still really concerned about how limited my mobility was because of the pain and he referred me to the Orthopaedic department of the hospital and immediately she requested an MRI due to the x-ray being inconclusive. Again, I was still convinced it was something that can’t be that’s serious and there would be a simple solution to the pain…how wrong was I!

And here began the full journey with so many periods of despair and wanting to give up but I knew I had to keep going for my daughter at the very least. She deserved a mum that was going to fight through the pain, and I can’t even begin to explain how now, I feel like I have failed her.

So, after the MRI scan, they ran a second, some blood tests and began medications to help with the pain. To begin with we were told that I had some inflammation in the base of my spine which was causing 2 discs to move and because they were sitting on my nerves in my spine it was causing the issues in my legs. It was explained that with some anti-inflammatory medication (Naproxen) that it would reduce the swelling around the discs, and they would move back into place on their own without assistance and the pain would go away. Over the course of the next year the pain was getting worse by the day, daily tasks becoming more difficult, I could no longer walk long distances at this point or carry anything too heavy which with a toddler was not ideal. I spent months arguing for extra medication for the pain which the GP’s were reluctant to give to me but eventually I was prescribed not only the anti-inflammatory medication but also medication to treat both the physical pain but also the nerve pain. Surprisingly to me, they needed different medication and the only information I was given about the issues I was facing was actually from Google.

In 2019 the pain clinic agreed to give me some injections into my spine that was supposed to help ease the pain. The procedure, albeit simple, gave me sheer anxiety. I was filled with nerves all day and my mum couldn’t be in the waiting room with me, so I was so scared and alone. I have never had to go through any procedures that I remember so this was new to me, and I needed my mum. I was there for hours until they called me down and I remember being wheeled down to the surgical room shaking. As I entered the room my eyes fixated on all the machines, the tools, and the amount of people in the room itself but there was one woman who instantly came to be at my face level and even with masks on I could tell she had a kind face. Her eyes were beautiful and so calming and she softly told me I’d be okay. My consultant explained the procedure and what was going to happen and as he explained further, I began to panic as the anxiety set it. They started the procedure, and the woman held my hand in hers and with her other hand she was stroking my face and wiping my tears away, but the anxiety just increased to the point I was sobbing uncontrollably and they had to put me under. The last thing I remember is that woman and I never got to thank her for keeping me as calm as she could and for making me feel like it was okay to be scared. I woke up from the anaesthetic after a couple of hours and was given my tea and toast and sent home. Leaving the hospital even through the negative emotions that come hand in hand with anxiety, I felt full of hope that finally something was going to work and take the pain away. The procedure was done on the Friday, I was straight on the phone Monday morning to my GP in tears next to my mum begging them to make the pain stop. The procedure didn’t work at all…it made the pain increase. They gave me some Gabapentin for the pain and after a few weeks of severe side effects the pain had plateaued out and was at a steady 4-6 out of 10 depending on what I had been doing. Daily pain was becoming a drain on both my mental and emotional health and I had to go back on my anti-depressants, but they couldn’t give me anything for my anxiety because by this point, I was on too many medications that anything else could send my body into an overdose.

Eventually when the pain was becoming unbearable, they agreed to send me to a spinal consultant where I had to have another scan which showed the discs were still out of place despite the swelling decreasing a little, so my next option was surgery for my lower spine. The option was to shave the bone down so it wasn’t sitting on my nerves anymore which should reduce the pain to a minimum and would mean that physio could then help with strengthening my muscles as they had taken the brunt of a lot of the symptoms I was having and then the pain clinic could concentrate on a mix of medication that would mean I would be relatively pain free. They gave me a few days to think about it and go over the options with my mum as it would mean her taking some time off of work to look after both my daughter and myself. After a lot of deliberation, I felt like I owed it to my daughter to at least try…I was running out of options, and this felt like a final choice.

So, in October 2020 I was scheduled in for surgery and as the time got closer my head filled with so many doubts, fears and hopes that I was an emotional wreck with absolutely no social circle to lean on in my time of need. My mum took the brunt of my fears and emotional backlash from all the negative emotions I was feeling, and I feel awful for the way I was back then. Surgery day came and went with no hitches until the evening. Firstly, I was told that the 1-inch incision to shave down 2 discs turned into a 4-inch incision to shave down 4 discs. The scar is now one of my biggest insecurities of my body. The only memories I have of that day is the woman who took me down to theatre and stayed with me holding my hand until I was under, but I also remember waking up in recovery numerous times screaming in pain and them shouting to each other to put me back under again. I eventually was taken down to the ward, but I was asleep at the time. Every time I was waking up on the ward I was screaming in pain, the doctor on call and the pharmacist were refusing to give me my medication, I had had nothing to eat either and just wanted to go home so against the decision of the hospital I self-discharged. My mum was still in the waiting area with my daughter and all I wanted was my own bed, my medication and sleep. After seeing the physio team who explained to me all of the after surgery stretches, they let me leave but I was so unprepared for what was going to happen next.

The first day or so was fine, I slept a LOT, could move around the home with my crutches and wasn’t feeling much pain at all but this was because all of the anaesthetic they had to pump me with was still in my system. Come day number 3 the pain hit, and it hit hard…I cried, a lot and couldn’t even sit up to eat my food. All I could do was prop my head up slightly and binge watch TVD and Lucifer on my tele. They would come and sit with me so I wasn’t on my own and it took 9 days for me to be able to get up again and walk around the house with aids again, but the pain was still sky high. After 2 and a half weeks my mum went back to work but was still coming over in the morning and helping us set up for the day, premade lunch and would come over straight from work and sort our dinner and get us ready for bed and making sure I had taken my medication. Recovery had begun but I had no idea the journey I would go on over the following 2 years…

I was supposed to be seen by physio after 6 weeks to start the process of building up the strength I had lost but it took them 6 months by which point the physio, again, wouldn’t touch me because the pain was restricting too much so again, I was referred back to the spinal clinic to the same consultant. He ran a full spinal MRI scan with contrast dye as well as conducting a nerve test and we then found that the discs at the bottom were still out of line, I had discs out at the top too which is what had begun causing ‘paralysis’ in my arms and not only had the surgery not worked like they had hoped, but they had also scared the nerves so now the damage would be irreversible.

Now became 2 years of absolute hell filled with extreme pain, battles with the NHS and no help whatsoever. I have had nothing but issues with all departments having no communication with each other or just ignoring what had been said on file. One spinal specialist who I managed to see who has worked for over 15 years with people with problems like mine had suggested I should be fitted with a device in the base of my spine that would send an electrical shock to the nerves to block the pain receptors before it reaches my brain…this never happened. He had also suggested another round of injections in my spine on both sides as well as the top to ensure all nerves were blocked…this never happened. A pain consultant saw me also and suggested deep breathing, yoga and mental wellness exercises to help with the pain which I still do now, but they don’t help. The 3rd consultant in the pain management department suggested trialling different meds and doses until we found a good mix for both my physical pain, nerve pain and my mental health meds…this all stopped and nothing more was said about it. I have had no contact from the pain clinic since April of this year. Now my GP has an issue with the fact I am on some medications that should only be given in the short term and has cut them out of my prescription entirely. The first medication they cut was the Naproxen which they believe is doing nothing for me since I have been on it so long. They’ve taken off my codeine because you can become highly addicted too but the issue with that was that I was only taking it before bed and only on the days where the pain was too much. He then replaced the codeine with 2 extra doses of morphine a day as and when I needed it – which is just as addictive and makes me feel so drowsy so I can’t take 4 a day even if my body needs the extra pain medication. The pain clinic had given me a diazepam to help with the contact spasms I was getting and again I would only take this in the evening before bed to stop the spasms for long enough that I could fall asleep and very occasionally through the day if I had a spasm ‘attack’. Because of the addiction status they have taken it off me entirely pending a chat with the pain management team…at this point I am just tired of fighting the NHS to be out of pain I really am.

So now we are at a standstill, just waiting and that’s all I ever feel that I am doing, it’s just like they have pressed a pause button on my life, and I don’t have access to un-pause it.

Here’s where we’re at right now;

My back still spasms (more when I lay down for bed) and the muscles still tighten at the base of my back and at my shoulders/neck. The ones at the top cause issues with my headaches when the muscles are tense, and my neck will lock so I can’t turn it left to right. I get a lot of spasms and weakness daily in both arms now and my muscles jerk making both drinking and eating difficult at times and I am constantly dropping cups etc. which is problematic with hot drinks. The weakness means I can barely pick my phone up and hold it because it feels like I am holding a brick and when the ‘paralysis’ hits I have no choice but to wear my arm in a sling otherwise it is so heavy, and I won’t be able to hold anything at those times either because I can’t actually feel it in my hands.

Moving down to my legs, I now have the symptoms in both legs which includes the ‘paralysis/numbness’ where it feels like I have a dead leg and means I can’t feel the floor underneath my feet in those moments. I lose complete use of whichever leg the ‘paralysis’ has appeared in too which is okay if my arms are working as then I can use my aids properly. The problem comes when my legs and arms have symptoms, and I can’t use my aids. We do have things set up around the house to make mobility easier for me but living in a 3rd floor flat with a lift that breaks down a lot means we don’t get out either so for us, we would love to be given a house with adaptations so that we both have access to an outside space for the fact we now only leave the house with my mum (in case I have an emergency or incident) and that is only once a week. I have constant pins and needles in my feet along with burning sensations that run up my leg and can last hours, sometimes even days. The only way I can describe it is like my bones turn into burning hot metal poles that just burn from the inside out, its horrendous because you can’t cool down. The muscle spasms in my leg will reduce me to tears because the pain level hits a solid 9. If I am standing when the spasms hit, it will take me to the floor, and nothing actually helps to ease it. They also can occur in my sleep which will obviously wake me up and I am pretty much stuck with my legs locked, in bed, until it eases enough to go back to sleep.

My knees and ankles have taken the full brunt of the weakness of my muscles as well as carrying the extra weight and weakened muscle strength so now we have new issues where my right knee will turn 90 degrees inwards which is not only extremely uncomfortable but painful to the point even with a knee brace on, I can’t put any weight onto that leg. My ankles are constantly hurting which makes walking painful for me so when these things happen, I end up being in bed or laid up on the sofa unable to do anything.

I also get quite a lot of side effects from all the medication I am on which have been affecting my life daily and it’s becoming a struggle. The side effects I personally have been experiencing (which aren’t the same for every person on these medications) include;

- Massive weigh gain (I’ve gone from 9-10 stone to 13 stone). This is a combination of the medication and eating a regular diet but no way of burning the calories off. I’ve tried calory deficits which doesn’t work when you’re barely burning 500 calories in a day and there is no other way for me to drop some of the weight.

- Severe Night terrors that keep me awake for the rest of the night and feel so real. If you’ve ever woke up from a dream and can’t remember if the dream you’ve had is real or not, well imagine that but a scene out of a horror film where you are fully aware you are asleep but can’t wake up and you wake up in a complete panic. They are the worst side effect I do have from the medication as it will always drain my mental wellbeing afterwards.

- Extreme fatigue which is the one that effects my day-to-day life massively. I take my daughter to bed around 7/7:30 and she has always fell asleep with me in bed with her and because I take my medication at around 6pm I do end up falling asleep with her, waking up around midnight and then having 1-2 naps during the day for a couple of hours for my body to recover from not sleeping at night-time. I have spoken to the GP but not only am I on too much medication to change anything around without something else being affected by the change but, they do not prescribe any sort of sleep aid anymore which is annoying as now the only time I do get a proper night’s sleep is when my body shuts down on me and I sleep for 12-14 hours straight through.

- Heat sweats that come out of nowhere. My entire body will heat up and it’s like someone has poured an entire bucket of water over my head and it takes forever to cool down again.

Obviously, we have discussed the physical aspects but mentally my mindset has also been affected massively. I have HUGE health and social anxiety which makes it difficult to go places and being too scared to leave the house with my daughter on my own. It also then effects my daughter which is why having access to an outside space would be ideal because we could still get fresh air and do our learning outside etc. but for now, we just have to adapt our daily routine to what suits my health needs. My anxiety has increased, and I do have anxiety and panic attacks when I am out and get overwhelmed (I have been experiencing sensory overloads so if I am in a shop that has music on loud with everyone in the store talking/shouting over the noise and is so busy you’re fighting to get through I will instantly panic and feel like I need to get out of there as quick as possible. My depression is also getting worse and even though I have reached out for help the waiting lists are huge and there is limited help available because of the root causes of the depression being my health issues. Being stuck in a small flat with no communication with adults apart from on social media, with no one to talk to in person makes you feel isolated and that in turn makes you feel even more depressed. Sure, I had depression before the health issues, but it was under control until my health started to decline. I have been reduced to tears and hitting rock bottom with my depression and have allowed it to almost consume my life, but I know that journalling daily and even blogging like this will help not only my mental health but will show anyone who may be struggling that it is okay to not be 100% all of the time.

So, this is where we are at right now and we are keeping a record of the mistreatment and the way things have been handled in the case I get worse due to the negligence and incompetency of the departments I am under and the GP service too. I have always said that we wouldn’t treat an animal like this so I don’t understand how they can treat humans like this…but it is what it is, and tomorrow is a new day!

Ang_xo