It’s difficult to write this post. I never thought I would ever be writing something like this. But I had to tell you all because my blog is a huge part of my life and… my life has changed dramatically.
On May 9th my second child and beautiful baby boy, Felix was born. Following a difficult birth, Felix was taken away at birth to be resuscitated and spent 5 days in intensive care for treatment of HIE. Although Felix has completely recovered and is healthy, it’s a different story for me.
It has been nearly 8 weeks since I gave birth and gradually over that time I have lost my mobility, and with it have lost my confidence. I have lost the ability to walk. I depend on crutches to move around and have resorted to using a mobility scooter to get out of the house.
How did it happen?
Well, let’s just start by saying I have always been a very active person with no health problems, so this has come as a complete surprise. Thankfully, I have never had any issues with walking, my mobility or hips. I have always been “normal”.
After giving birth to Felix (read here) I was in pain but I considered it normal… after all, I was told by doctors, midwives, etc that it was normal. Labour hurts and postnatally, all women are in pain; that’s a given. I had an assisted delivery with forceps and an episiotomy so I was very sore down below.
I couldn’t walk properly because of the pain, by this I mean I had a limp and struggled to walk at a normal pace. Felix was down in intensive care so I was going to see him multiple times a day, usually I had to be in a wheelchair but sometimes I walked. I was encouraged by the midwives to keep mobile. Getting up and walking does help after labour and speeds up the recovery process; I knew this even from last time having had a c-section. And I did want to up and walking… but it hurt too much. I just assumed it was the episiotomy and the pain would go away eventually.
Looking back, though, the pain I was experiencing wasn’t just where the episiotomy was. I remember reporting to the doctors I had a crushing feeling in my ribs, my back hurt, and I had a pain going all down my right leg. They did checks and told me it was most likely to do with the labour and I would get better in time.
I was discharged from hospital walking. I walked to my friends car, who picked us up, and then once I got home I walked from out of her car to my house, and that night slept in my bed like usual. Apart from the pain I was in and the limp, nothing was out of ordinary.
However from there it spiralled out of control. The pain in my back, my leg, my pelvis got worse and the pain killers I was taking were not taking the edge off. I couldn’t sit down because of the episiotomy pain but also there was an excruciating pain in my right leg. I told my midwife at home who referred me to the women health physiotherapy team.
In week 2 postnatally, things got even worse. I had been to see a GP who told me it was probably a trapped nerve and would get better with time. 24 hours later, I was at the a&e because I couldn’t walk at all that evening and had to sleep on the sofa. The pain I had experienced was nothing like I had felt before, not even like giving birth, it was horrific… and sent me to a&e. I was told in a&e I had a muscle strain in my right thigh… and it would get better with time.
A few days later I went to another GP at a&e after hours on a Sunday. I couldn’t bare it any longer and my mobility was getting worse. To get up the stairs I had to cling onto the railing and walls, I could barely make it to the bathroom, and I couldn’t lay straight in bed. Moving my right leg seemed like it was almost impossible and my limp had turned more into a walking crawl. I was losing the ability to walk and I needed help.
That GP in the after hours at the hospital told me it was definitely not a muscle strain or trapped nerve and something more serious. I was assessed, told to contact my local GP the next morning ASAP and prescribed morphine. He suspected something had happened in my spine and it was most likely down to the epidural I had during labour which failed. He explained the side effects of a failed epidural can be nerve damage to the spine, and this is what he thought it was.
The GP agreed it looked/sounded like nerve damage and referred me urgently to the physiotherapy team. I had already been referred to the womens health physio’s at this point via my midwife but this was general physiotherapy. I did get an appointment but it wasn’t until the end of June, at this point it was the end of May meaning my urgent appointment wasn’t for another month yet. I was so upset because this meant I had to wait a month in pain without help or an answer to what was going on.
I couldn’t wait. My mobility was getting worse… i could feel my right leg starting to giving up. The pain in my back was awful, I still got that crushing feeling in my ribs, tingling all up my leg when it was relaxed, numbness, and I was unable to get to the toliet on time. All of this at the same time as having a newborn, breastfeeding, and looking after my toddler was getting me really depressed. My partner was on paternity leave but due back to work June 6th. My physio appointment wasn’t until the end of June and there was absolutely no way I could care for my children on my own, or myself. There was no other option but for him to stay off work. I felt helpless. I was getting so depressed, really felt like I was starting to lose myself. And the pain was unbearable. Every day, 24 hours a day, the pain.
We decided to pay privately for a physio as couldn’t wait for the NHS appointment. The physio I saw privately was absolutely fantastic and really helped me in more ways I can explain. He actually works part time for the NHS, and said politely that although he did want to help me at his clinic – the private one – I was best within the NHS. He tried to help speed things up for me and spoke to health professionals he knew. His diagnosis was the same as the GP at out of hours had said; he believed I had nerve damage/irritation from the failed epidural. A nerve in my spine which went down my hip and into my right leg.
Long story short, he tried to help me with basic exercises but decided that the condition I was in was just too… severe for him to treat me there and I needed to be in the NHS at the hospitals where they could give the help I needed. Finally, I was given an appointment at the womens health physiotherapy team. The physio I see there, Claire, is fantastic. I am currently doing hydrotherapy once a week with her. To begin with, she assessed me and what had happened and agreed it sounded like nerve irritation however was not as bad as I thought it was. I had assumed the worst; a nerve had been damaged so badly I wouldn’t be able to walk ever again. She reassured me this wasn’t the case and it wasn’t nerve damage as such, but more likely a nerve irritation maybe with scar tissue damage. It was temporary and she could help me recover.
However… over the last 4 weeks since starting hydrotherapy at women’s health physio my condition has worsened. By the time it came to the physiotherapy appointment, the one at the end of June, I was using crutches and my mobility had really decreased. I also have had an X-RAY as referred by a local GP which showed significant wear in my right hip joint and arthritis, and prescribed loads of medication.
To deal with the pain I am on opioids (like morphine), in addition to antidepressants and anti-inflammatory drugs.
When I saw the physio at the end of June, I saw the X-RAY. When I had the X-RAY, the team there said it looked normal with no fractures so I went away thinking everything was OK and it was just infact the nerve irritation which I’d already been told. However, in that appointment she said the X-RAY results were not normal at all and she thought the main problem is the arthritis and the pain from the epidural side effects had probably got better by now. Meaning I had recovered from that, but now it was another problem.
I was so shocked to discover I had arthritis. The physio explained that this was something which had not happened overnight… it could have been going on for years without me knowing, without suffering from any pain. In the X-RAY,t the hip socket showed no gap between the hip joint and the hip bone; meaning it was rubbing together. Bone on bone. My left side, which is completely fine, shows a normal gap so the movement is normal.
After an assessment, the physio was confident enough to say yes it is definitely arthritis and the next and only step is to see an orthopaedic doctor/surgeon who can discuss what to do next. At this moment in time of being told this all I could hear was ‘you are going to need a hip replacement’ and I was thinking ‘oh my god, I am only 28 years old”.
So why, even though the bone wear and arthritic hip has been there for… well, we don’t know how long but it will have been a long time, has it only now started to cause so much pain? The physio said it is like a time ticking bomb… it was only a matter of time until something irritated it and then it went BANG. That irritation would have been child birth.
I had no pain what so ever in pregnancy, I didn’t suffer from pelvic gridle pain and there were no ‘clues’ at all to make me expect this. I’ve had no issues in the past with my hip and so to hear this was a big shock.
Not only has it been a shock but it has completely changed my life. Slowly I have lost the ability to walk. The pain has took over; I am in chronic pain 24 hours around the clock, I struggle to get out of bed, dress myself, get up the stairs with crutches. To leave the house I have to use crutches to get into a car and now I can only go places with scooter/wheelchair hire, as the crutches are too difficult to use and the pain too severe to walk only a few metres. I can’t walk unaided at all, not even one step.
I am doing hydrotherapy weekly. I am waiting to see an orthopaedic. I have ordered a mobility scooter so I can get out of the house. I am in pain 24 hours a day despite taking strong pain killers. No one and nothing else can help until I see an orthopaedic and when will that be? Well, I received the NHS appointment and it’s not until the 4th August… as of writing this it is 3rd July. A month away. I’m so upset but there is nothing else I can do. I have rang them and asked for a sooner appointment but that is all they have available.
In the mean time I think I may be referred to pain clinic. I’ve been taking paracetamol, ibuprofen and opoids for nearly 8 weeks now. It must be damaging my insides so much… that’s another thing that upsets me; knowing the amount of damage they must be doing to my kidney and liver, but I have no option but to take them for pain relief.
I rarely get out of the house. I have not socialised with any other parents or friends since I was pregnant. I am depressed, I have anxiety, and I am so incredibly frustrated. I am in shock and finding it hard to accept what has happened. Some days I am more positive than others. On bad days I really struggle to even talk without yelling at someone.
What has happened to me has took away my ability to walk, but not only that it has taken away my independence, my happiness and ability to parent my children. my whole family is suffering because of this. My son who is nearly 4 is incredibly frustrated with me and upset with the massive change. He asks me if my leg is better yet and it breaks my heart. I miss him so much even though I see him every day. I miss my old life, my old body and I have a lot of hatred for what has happened. There is no one to blame, though, no one and nothing. I just have to accept it and that is the hard part.
Hydrotherapy is important to my recovery because my muscles in the right leg and hip are, well, ruined, really, due to the fact that I haven’t walked properly since before I gave birth. The hydrotherapy is helping rebuild those muscles, the strength and ability to weight-bear. In the warm water I can actually take steps unaided, it is fantastic. For my mental health, there is nothing better than being at hydrotherapy… for me it is the only way I can feel like a normal person. I can move my legs, I can exercise and I can even walk. It will just be a long time until I can do that on land.
How long? I don’t know. I live in uncertainty. My family lives in uncertainty, no one knows what is going to happen and when… all we know is right now and that is; I am in pain and I can’t walk.
My mental health is shocking at the moment. There are so many problems at home because of what is going on. I’m finding it really hard to live with it at the moment, knowing that I am the reason everything has changed.
I struggle to find joy in most things I used to do, simply because I can’t do them anymore or doing them gives me a lot of pain. I’ve only managed to took dinner once in the last 8 weeks, and I love cooking. It was a real struggle and left me in lots of pain afterwards. It’s just so discouraging to do things when when I am left with after is pain… because I moved. I can’t just stay still. I have 2 children. I want to live. I want to move. I want to walk.
In the last few weeks I have started to accept my mobility issues. I figured that if I sit and think ‘I can’t walk’ and think I will get better soon so until then I have to suffer… I am losing time. The attitude I need to have is ‘I can’t walk right now, so I need to find alternative ways around it to help so I can try to live like I used to’. It takes a lot of mental and physical strength to do this but, I am getting there.
As of writing this, i can happily report that I have day hired a scooter twice at a shopping centre and the city centre.. these were lovely days out with my family, and some of the only times I have been out with both children together. In addition, we have spent 1 night at a local hotel; a staycation, so to speak, as we can’t go away. It had a lovely pool and we were the only ones using it in the 2 days at the hotel. A real treat. I also went to the cinema for my birthday. So in 8 weeks, I have only been out as a family 4 times… and I had my baby in May. It’s July now. That just depresses me so much. I really need to get out more, and I want to, but it’s so difficult. It’s hard having mobility issues but it’s even harder having mobility issues and not driving. The other places I go are just to appointments and hydrotherapy.
On a positive note, I’ve hired a mobility scooter to use from home. It is a light weight, transportable one which you can take apart into 4 pieces. I’m hoping this means I can get out locally; to the park, to the shops, to the cafe, the library, etc., and even to swimming. It will open a whole new world to me as even just using the crutches down the road to the local park is too difficult at the moment. I’m really hoping the scooter is going to cheer me up and help me in many ways… my mental health, relationship, building bonds with my family, perhaps even socialising.
So I end this now with uncertainty. I hope the next time I write regarding my health it is good news reporting that I am walking again. It is difficult to write on my blog because it reminds me, obviously, of my previous life… the life I used to have which isn’t the life I have now because I was walking. That’s the hardest thing to accept.
I never realised before how privileged I was to be healthy. I have never suffered from a condition or disease, been disabled or had health issues. It just goes to show you never know what might happen to you.
I am so happy I spent so much time with Eric having days out, fun adventures, even holidays, when I was pregnant. Lots of people told me I was doing too much and I should slow down, put my feet up and enjoy being pregnant but something was niggling inside of me and told me it’s now or never. I can’t say I knew what was going to happen because I’m not physic, but I really did live my life to it’s full potential when I was pregnant with Felix because I *thought* it was going to be the end of *something*; I wasn’t sure what. I even took Eric on holiday by myself at 34 weeks pregnant, we went to the seaside, when I was 32 weeks pregnant we had our last family holiday to Center Parcs, had an overnight stay in Tamworth for Drayton Manor and ThomasLand, went to the Peak District, visited all my favourite days out in Sheffield including local parks, playgrounds and museums. I am so lucky to have experienced all of that with my son before I lost my ability to walk because now I don’t know when and if I will be able to do those things with him again.
Thank you for reading. My next blog post will be about accessible days out. If you have any to recommend please get in contact. I won’t be changing my blog or the niche, but please be aware that during this difficult time for me I might not be able to publish like I used to. I do hope you stick around as I really appreciate your time and your support.
You can read about my labour & delivery story for Felix if you haven’t already, here. If you usually read my blog for days out, you can read all about the places I’d love to go this year including any plans for trips/holidays here.
My most popular posts from the last few months if you’d like to read them are here;
Please email me at firstname.lastname@example.org if you have any advice regarding accessible days out or places to go that are suitable for disabled parents.