I first published this in august 2018 but I felt it would be a good read republished.
Yesterday I posted this post on my instagram –
I woke up feeling completely exhausted like I hadn’t slept in a month. I felt low in mood and my whole body ached like id been in the ring with rocky himself. I felt like I just needed a day doing nothing to try let it pass. Today however ive woken the same and I know ill probably feel this way for a few more days. Just moving my arms causes so much pain across my chest like ive lifted weights for days and that’s how my whole body feels right down to my finger tips.
Growing up I never had many health problems around age 13 I had a knee problem that I had to use crutches for now and again and miss a few days of school but it eventually fixed itself. I did have bad periods which ive talked about before. But around the age of 18 I started to just not feel well. I would have constant head aches and just feeling tired a lot. I would miss work and not having any god reason other than I just felt pain and exhaustion all the time. I would feel weak a lot like I just needed to sleep right away especially in my college days. Id visit the doctor on and off but nothing really much happened. I would catch any little virus like cold, flu, sickness bugs etc I would be ill a lot.
Just before falling pregnant with Corey I had become a carer in an elderly home and after a long shift I would notice a lot of pain in my lower back and right leg to the point I would be limping and not able to stand up straight. I just thought id over done it in work. I then had to leave that job to become my nans full-time carer through her cancer battle and as I wasn’t lifting or pushing wheelchairs as much the back pain faded until I became pregnant a few months later. I had a really bad pregnancy and in between that my nan died. I had been managing my pregnancy symptoms well until she died and then my health rapidly declined. If you read my pregnancy story you’ll see in more detail but to keep it short my blood levels suddenly changed well in fact I could have had it before which after being diagnosed I probably did but the correct tests weren’t done. But my iron levels were that of a car crash victim who had lost pints and pints of blood as I was told the specialists. I couldn’t stay awake I wouldn’t be able to walk a few steps without gasping for air from low oxygen. I was very poorly and needed blood transfusions. In this pregnancy it came to light after seeing specialists that I had pernicious Anemia and a B12 deficiency. For me my stomach cells attacked my own bodies immune system which is turn stopped my body producing the red blood cells needed. Which for me if a massive factor in my health.
Pernicious Anemia affects me daily! Some days im fine but most of the time I feel extremely exhausted and weak. Mid day I feel totally drained and have to lie down for an hour if not sleep to make it to the next part of the day. I have a very pale appearance and white gums. My inside eye lower lids are completely white aswell as my nail. I have a very weak immune system. I have to take weekly injections given by a nurse of b12 vitamin at one point it was daily for 8 weeks. I have to take vitamin D tablets as im also deficient in that, daily iron tablets X2 twice a day, a full vitamin twice day and 2 tablespoons of b12 liquid. Even then it doesn’t make me feel “well”.
After my pregnancy I was suffering incredibly with my lower back, I had put it down to having a csection and the spinal numbing but as the months went on it became worse and worse I couldn’t lie flat, walk, step or bend. It became really painful I visited the doctors who had told me it was down to the spinal. As time went on I started noticing pain in my arms, neck, hands everywhere. My legs at night were so painful and the muscles would lock. I started not sleeping and through the night I had a constant tingling in my legs that I felt like I had to keep them moving, I had stopped sleeping because of it so again I visited the doctors. They then diagnosed me with Willis-Ekbom disease also known as restless leg syndrome. I was put on medication for night-time which now is at the max dosage to relax the muscles in my legs and it does help but some nights the muscles lock so tight, my partner mark has to sit deep massaging them. It has also now progressed to my arms aswell.
As time went on I just didn’t feel myself at all. I had become really low in mood, the slightest touch to my body felt like a hard punch, headaches had always been a problem but they also became worse, I had incredible insomnia , my muscles in my whole body would tense up like a 3 day workout in a gym, I still had extreme exhaustion and weakness, and to top it off I found concentration really hard. Plus all these random things like always feeling like I had a cold so many random symptoms. I literally felt like I was going crazy. I thought how can I be feeling like this. I knew id only just had a baby but surely this wasn’t normal. I would try explain to family how I was feeling but I couldn’t even convince them that this was all real. I thought I was going mad. Like my whole body hurt so bad as if it was covered in huge bruises right down to my fingers and knuckles. I felt like I was moaning everyday and I thought how can anyone feel this much pain for no reason! I finally went to the doctors and I remember my first sentence being ” Im not crazy im probably going to sound it but..” and I just blurted it all out while he listened. And when I was finished he said I believe you may have fibromyalgia. I had never heard of it but he referred me to a specialist. I came home and went straight to the internet and I could not believe it EVERYTHING I was feeling was right there and I burst out crying. I finally didn’t feel crazy I literally cried for an hour. I had spent nearly 2 years in absolute agony feeling crazy but it was right there in front of me! Everything finally fit into place! I saw the specialist and he diagnosed me. I was finally given the pain relief I needed plus other medication and I finally started to feel better!
However I still had really bad back pain. I would Hoover and then for an hour or 2 after I couldn’t move from pain. I kept putting it down to fibro but as the months passed it had really started to get worse a lot worse. To the point I started not being able to lay flat or walk for long periods. I then had a miscarriage and after recovering I visited the doctor and was sent for a MRI scan but before the appointment arrived Derry happened hah! I became pregnant for the 2nd time and so I couldn’t have the scan.
Finally after recovering from my second csection it was time for the MRI scan. By now the pain was intense and completely effecting my daily life. It has really taken over I knew this couldn’t just be fibro. One day while hoovering I felt a huge intense pain in my lower back I was stuck in the position id been standing I started screaming with pain. It was the worse pain ive ever felt. Mark came straight home from work, I phoned my doctors who over the phone prescribed medication to unlock the muscles and release the nerve that had trapped it took about a week. My scan was a week later and I was in so much pain. I was now using crutches to move. I couldn’t turn my body I was taking tiny steps to not touch the nerve. Finally a week after my scan my doctor phoned me and I literally cried my eyes out. Half of me was crying in fear but the other half was relief, finally I had my answer after nearly 5 years of pain.
I have on 3 different levels multiple tears through my spinal discs. I found this picture that explains it really well. So where the pink is teared I have that on 3 different parts multiple times on each level so that when I bend or move I tap the nerve ends and cause pain. It can also trap the nerve completely and can take weeks to release it again. Which is BEYOND painful it hurts so badly.
I then have as well as this disc bulges on multiple levels and on 2 discs they have started to crumble and flatten which is why for years ive been in so much pain and im awaiting spinal surgery to try to help.
Daily I try to manage my symptoms with medications I also did try cannabis oil that did help but wasn’t for me for my own reasons. But I can’t lie some days my body just gives up. I’m only 27 I should still be able to run laps! But I can’t I actually feel some days I have the body of an 80-year-old! But it is what it is. Have to work with what you’ve got haha! I try to be positive and I know in the world there are so many worse off than me and im beyond grateful for what I have in life. I do suffered with depression and anxiety which ive talked about but I still try be positive.
I do have a few other health conditions but this post would go on to long hah!
But the reason for writing this was yesterday when I posted that picture about self-care and the illnesses I have I had 4 messages from other people whom have similar conditions and it started a conversation up which makes anyone suffering feel that bit better and it’s not so lonely. Do you suffer with chronic illnesses??
Your not alone or crazy! ha! x
HAVE A WONDERFUL DAY X