But you don’t look like you’re in pain…

Something very different that I’m sharing with you today. It’s very personal and I’m kind of scared to put it out there, but I’ve been feeling overwhelmed recently and I had the biggest urge to write down how I’m feeling and what I’m coping with. Living with chronic pain is NOT fun, I spend half my life in hospitals, clinics and Doctor’s surgeries, but it’s also something you can’t always see. I’m hoping this post will help you understand a little bit more about me and why sometimes I can be a little MIA.

You don’t see that every time I get up it’s like curtains closing over my eyes because I’m so dizzy.

You don’t see that I have sharp pain bolting through my legs every time I move.

You don’t see that I have arthritis in my knees and my back is in constant spasm and can’t bend more than a few inches.

You don’t see that it hurts to breathe because my back hurts so much.

You have no idea that every single day of my life, I’m on a concoction of medication that would send most people into either a hysterical mess or a zombie.

Just because you can’t see it, doesn’t mean it ceases to exist.

I’ve had this post saved as a draft for a while. I really didn’t know whether or not to post it, but I feel like I should because I am the most honest person you will meet and I don’t want you to feel like I’m sugar coating life through my blog. You all know I have an eating disorder, I’ve been completely open about it here, but this is something different. I do have health issues caused by my ED and even though I’m a lot better than I was and I don’t look like the stereotype, I still have an ED. That’s a post for another day though. Just like, I also have gastro problems… but today I’m talking about physical things that you don’t see.

This is hard for me to write. I am determined not to be defined by what’s wrong with me, I am one of the most stubborn people ever and I just keep on keeping on. I try not to complain too much, only if it’s so bad I’m in tears. At the moment, things are really rough. I feel like I’m being bounced around between medical professionals – either being told I’m a lost cause at 23, or that they agree I shouldn’t be in this much pain after so long, but they can’t do anything else.

I’m frustrated, I’m tearful, I feel like giving up, but I have to find the strength to carry on and not try and think too much of the future. The thought of the pain I could be in by 30 is almost enough to make me crumble.

For as long as I can remember I’ve always had painful knees, I used to dance as a child; I had to give up because my knees hurt too much. It didn’t help that I was overweight at the time, but I still don’t remember a time when my knees weren’t painful.

Then at 17, I fell over and fractured my right kneecap. Testament to how stubborn I am, I had my driving test booked already, so continued to drive and passed my test with a fractured kneecap.

When it did eventually heal, it was not the same and it hasn’t been since. That was 6 years ago. In that time I’ve found that I have early onset arthritis in both knees, which of course is a degenerative condition, so it’s not going to go away. I’ve had physio, weird electrolysis on my kneecap, MRIs, X-rays, offers of steroid injections… it’s endless.

There are other things going on in there including my kneecaps being too high (?!?!), but basically, now, I can’t kneel at all. When I stand or walk too far my knees go the brightest red you’ve ever seen and feel like they’re on fire. They bruise with a mere touch; they are the ugliest knees in the world, constantly swollen and bruised!

But, you don’t see any of that because I can cover it with clothes.

I’ve had severe dizziness for about 7 years, I’ve gone through so many tests and been told it could be blood pressure, my middle ear, infections… I’m always fobbed off though and I gave up when I was told that “some young women just get dizzy”. Along with everything else, it’s getting much worse. Now I can’t ever stand up without getting dizzy and I keep falling over as I faint for a few seconds – lots of bruised bums have happened this year!

Again, you don’t see that. Maybe you notice that my eyes look glazed over for a few seconds, maybe you don’t because I keep on talking like it’s not happening.

The “biggest” thing (I guess?!) was that I injured my back at work 4 years ago, slipped 4 out of 5 of the discs in the lumbar of my spine. Guess what I did?

Tried to keep on keeping on.

I know that so many of you will understand where I’m coming from when I say that I’m not good at putting myself first, it seems a common “problem” with women, we always put others before us.

I was a Carer when I injured my back, moving and handling people every day. I managed to carry on for a week before I collapsed in tears at a call and had to phone in and say I couldn’t do anymore.

I was signed off for 6 weeks, then went back to work on the premise of “light duties”. This didn’t happen and I was being sent back to people who needed hoisting after 2 weeks. I couldn’t keep handing back my work, so I just had to get on with it. There was one client I refused to go to because I could not manage it (and that’s where I injured my back), but most other things I just did.

I was given medication, referred to physio, which I couldn’t do because I was in so much pain, then moved on to acupuncture in the hope it would relieve me of some pain and allow me to do the physio exercises. It didn’t. I found out I have a curved spine and nerve damage too, most of the base of my spine is numb (it’s actually spreading down the side and into my butt cheeks now) and sometimes this creates problems with going to the loo. I won’t elaborate. At that stage I was told they wouldn’t operate as there was a 30% chance of improvement, 30% it would get worse and 30% it would stay the same. (I’m not sure where the other 10% is…)

I then moved house (and county) and here they do things differently. I got a new doctor who is really good, but because of the way things are done here I was referred to The Pain Clinic.

My consultant refused to get a more up to date MRI of my back and told me that everything that is wrong with me is because of a Vitamin D deficiency. Then in the next appointment he completely wrote me off, told me he can’t help, my back will only get worse and he can only give me even stronger medication – one which was incredibly addictive.

I didn’t take the medication as I felt like I was on more than enough (Tramadol, diazepam etc.) and went back to my Doctor who agreed I shouldn’t take the medication, but he couldn’t do anything else because I was already in the hands of the Pain Clinic. Eventually I started having acupuncture again, it gave me the smallest amount of relief for 2 days; then they started sending me appointments once every 4 months… and asked if I was noticing any benefits…

I discharged myself there and then because the service was awful. Cue another Doctor’s appointment.

At that appointment, I actually left feeling like there was hope. I was referred to a clinic specialising in orthopaedics. For this part in my journey, I cannot complain about the treatment I received; my clinic was really good: weekly appointments, gym classes specifically created for back pain, massages, taping my back and knees up… lots of things.

However, there was only so much they could do without seeing more of an improvement. Whilst I felt supported and had regular appointments, I wasn’t getting the gains in movement I should have been or the decrease in pain. I could bend my back a few inches more and the shooting pains in my legs lessened slightly, but it wasn’t enough to justify them keeping going with my treatment. They agree that I shouldn’t still be in this much pain and have such limited movement, but there’s nothing else they can do.

My biggest grievance is that all of these professionals are going on a 4 year old MRI and doing what is typical for someone with a slipped disc, an injury which is supposed to get better in 4-6 weeks. It’s been 4 years.

This is where I am now, I still have the exercises the clinic gave me, but I’ve been discharged and am meant to go back to the Pain clinic and my Doctor. I feel so disheartened. I’ve basically been told to live with this pain, which is now so bad it hurts to breathe and I cannot arch my back at all. My boyfriend is fantastic, but I feel like a burden.

He has to help me take my trousers off at night because I can’t bend to do it… he shouldn’t have to do that at my age. He has to do more than his fair share of driving when I’m this bad as I can barely lift my legs up and my back gets so tight I can’t stretch it out. The slightest touch bruises my spine, it’s always black and blue – my boyfriend gives me massages, but he has to be gentle else he’ll cause more bruises; sitting on a hard chair is a no-no unless I want to be unable to sit against anything for a week.

I love to walk, but can no longer walk more than 1 mile. We went to Paris a couple of years ago and I desperately wanted to walk up the Eiffel tower, which I did, but then spent the next day in bed unable to move.

Life is going in circles at the moment.

I’m in pain, so I sit, then I get stiff and have to try and move around, which causes more pain, so then I try and rest and get stiff again. You get the gist of it.

I take around 25 pills a day and they barely touch the pain… I don’t know what I’d be like without them though, so maybe they do help? I just feel lost, which is so unlike me.

I want to be able to lead a normal life, I’m going away this weekend and I now feel so bad that I’m already worrying about what I will and won’t be able to do, I do not want to be a burden and ruin anyone else’s weekend, but I feel like I HAVE to start listening to my body when it tells me to stop. I’ve never got to this point before, I’ve always just kept on and done things even if I knew I’d be in agony the next day.

I feel like I’m the world’s best at putting a smile on my face and acting like it’s fine, but I don’t know how much longer I can do that. It’s against everything that I am. I don’t lie, everything is black and white with me, I believe in honesty, yet I’m painting on a face every day.

I guess what I want to get across is that you can’t always see what’s wrong with people, but it doesn’t mean they aren’t fighting battles every single day. I want to keep on doing what I love, but I hope you understand a bit more why sometimes I can be quiet. I don’t want to hide away anymore, it’s going to be a weird adjustment, but I’m going to try and bump myself up the list a bit and listen to my body.

Picture from Favim

I know I’ve gone on a bit, so thank you (and congratulations!) if you’ve got this far. I promise, I’ll be back to my normal schedule tomorrow.