Wednesday, 21 October 2015

MORE ABOUT MY PAIN

After my first post introducing myself and this blog, I thought it was a good idea to go into more detail about my health problems and what I’ve been through. This is probably going to be quite a long post, so apologies, but there’s a lot to tell.

As I mentioned, my pain began April 4th 2010. It was actually Easter Sunday. I was off University for Easter at the time and wasn’t working that day. As I’d done way too much shopping recently, and couldn’t fit any more clothes in my wardrobe (the constant struggle so many of us face), I decided to use the day to do some spring cleaning. Part way through I started with pain in my lower abdomen/pelvic area on my right side. Not long after I began to feel nauseous too. So I had a bit of a rest (watching Friends), and then continued with my room. I woke up Monday morning and it seemed to have gone, so I got ready and went to work. It was on my way there it started again, and was on and off throughout the day. By Tuesday, it was constant and had gone much worse. But being the stubborn person I am I ignored it and went to work. An hour into my shift the pain was horrendous. I worked at New Look and I was on the fitting room at the time and I just burst into tears and kind of collapsed to the floor with the pain, I just couldn’t bear it any longer. My supervisor sent me home and I went straight to hospital to the dreaded Accident and Emergency room.

Because of the location of the pain, they thought it was probably Appendicitis. I was kept in for 2 nights and had an ultrasound scan which didn’t show any problems. I was sent home and told to go and see my GP instead if it continued. This was the beginning of 3 years of doctors, hospital stays and outpatient appointments, scans, tests and treatments. It was an endless repetition of being told they had no idea what was causing the pain, there was nothing they could do, and then being passed on to a different specialist.

I was never able to return to work or university again. Once I got home from this first visit to hospital, I was basically bed ridden. The pain was excruciating. It was constant. And it was relentless. I was stuck lay down flat in bed for years. Trying to sit, stand or walk made the pain unbearable. I could only manage to be out of bed for between 5 and 15 minutes a day. After the first couple of weeks it wasn’t just in my pelvis anymore either. It was also all down my right leg, and soon I started feeling the same kind of pain in the left side of my pelvis and down the left leg, which I was told was referred pain. Going to hospital appointments was a massive struggle. Stairs were awful; I only went downstairs when I absolutely had to. It would take me ages to get down and get in the car, and the pain it caused was unreal. I would have to lay the passenger seat right back and travel like that. I’d then have to use a wheelchair, and once at my appointment I would have to be put in an empty room where there was an examination bed to immediately lie down. The nurses, doctors and other patients would be in shock when they’d see me. Turning up for an outpatient appointment, in my pyjamas (because it was too damn hard to get dressed), crying my eyes out with the pain, face all burnt up, having to lie down, unable to even get myself out of the wheelchair. But I couldn’t have cared less what people were thinking, I was in too much pain to care.

I’ve seen Gynaecologists, general surgeons, orthopaedic consultants, rheumatologists, consultant neurosurgeons, pain psychologists, and pain management consultants. I’ve had a gynaecological laparoscopy, so many scans and tests I can’t even remember, had various injections, physiotherapy and acupuncture. For a while, it was thought my back was the source. I have an area of damage in my lower back where I have a degenerative bulging disc. I’ve suffered from lower back problems for years, it’s a result of a fall when horse riding as a young teenager. However, after seeing 2 different consultant neurosurgeons they both confirmed that it had nothing to do with the pain I was in. The only thing that ever helped was facet joint injections. I had four lots of these, and though I did benefit from some of them, it wasn’t drastic and it wasn’t permanent. I’ve also tried a long list of medication, including various pain medications, anti-inflammatories and anti-depressants. The only thing that helps me is Tramadol. I’ve been on them now for over 5 years. I was on a very high dose, but in the last year I’ve managed to half my dosage, a huge accomplishment for me! I hate taking them. The side effects I get are awful and I can’t wait to be able to fully stop, although I’m a long way off from being able to and I know how difficult it’s going to be.

Anyway, I had been referred to the pain clinic at one particular hospital, and it was here I had the facet joint injections. However once they weren’t really working, I was told there was nothing else they could do. I was eventually referred to a pain management clinic at a different hospital, and it was here that things started to change. It was at my first appointment that they explained to me that based on all my scans and test results there was nothing physically that should be causing me so much pain. And I was told I had pretty much exhausted all of my options. They explained briefly about my central nervous system processing pain messages and that it was telling me to feel pain, but the condition fibromyalgia was never mentioned. They told me that it was very likely I was going to have the pain for the rest of the life. The thought of never getting better was the most terrifying thing to me! I’d spend so much time crying to my boyfriend about how scared I was that I was never going to get better. But that was just not an option. I had to find a way to fight through the pain and find a way to live with it. The pain clinic I was under offered me guidance on doing this, and tips that might help. But it was all down to me.

And so this is when things changed for me and my progress began. Now, I cannot stress enough how unbelievably slow and difficult my progress was. I have worked extremely hard to get to where I am today. I was confined to bed, and the time spent sitting, standing and walking I refer to as my ‘up time’. At the time, this was roughly 10 minutes a day. And that was already a big struggle for me. My progress started by increasing this by just 1 minute a day for a week. So, the first week my goal was to be up for 11 minutes a day. Then, presuming I achieved this, the second week I would try and increase this to 12 minutes a day, and so on. A couple of months later I would try increasing what I was doing by 2 minutes a day, then eventually by 5 minutes a day, and you get the idea. Now, I know that sounds ridiculously tiny, but believe me that 1 minute a day extra was So. Effing. Hard. Some days and some weeks I couldn’t do it. The pain was absolutely unbearable. It has taken me 2 and a half years to get to where I am now. It has been and continues to be very slow, tediously slow actually. I’ve been kind of stuck though for the last several months. Once I started getting better I began suffering with pain in my shoulders, ribs and back. For a long time, I had presumed this was just a result from losing all of my muscle and strength while I was inactive. But it eventually got to a point where I had to lie down and rest not because of the pelvic pain but the pain through the rest of my upper body instead. I was doing strengthening exercises and trying to fight through it like I would my pelvic pain, thinking I would eventually get stronger and it would be OK. But this never happened. It was only after injuring my left rib towards the end of 2014 that I came across the term fibromyalgia. I was reading through a description and symptoms of it and couldn’t believe it. Everything I was reading was exactly what I’d been suffering with. It was what I had been told was wrong with me briefly at the pain clinic, but I’d never been given an actual diagnosis or a name for my condition, which always made it difficult when talking to people and having to explain what was wrong. I made a doctor’s appointment, and my GP was equally shocked that none of my consultants had ever mentioned it. This was what I had. I now know that all the pain I suffer from is a result of fibromyalgia, in addition to a whole load of other symptoms I have.

Where I’m at now is a million times better than I was. The progress I have made is amazing and I’m extremely proud of myself for what I’ve accomplished. But I’m nowhere near done. I’m still very limited. But I’m getting there, just slowly. I can be up now for several hours at a time (most days). And trust me these hours I am up are by no means easy or normal for me, but I’m doing it. In all honesty, I don’t even remember how it feels to be normal. I don’t know if I’ll ever feel that way again, but I have to stay hopeful. Maybe I won’t ever be pain free. Maybe nothing will ever be easy for me in the way it is for most people. But I can tell you that I won’t stop fighting until I can live a normal life again. I’m sick of not being able to do the things I want. And this isn’t just a physical thing for me, as I mentioned I also have a lot of mental and emotional issues to work through. I have many more struggles along with the actual pain, but that’s another story!

So, there you have it. A bit of background to my pain and a brief insight to my last 5 years. It’s been horrible, but I know I’m fortunate in many ways. I know there are much worse and more serious health conditions that so many people are living with. And I’m lucky that I have the support that I do. I have the best boyfriend and family, and a Chihuahua called Angel who is my little baby.

I’m sorry this has been so lengthy, but I figured it was best to give people more of an idea about what I’ve been through. If there’s anything else you’d like to know or anything you’re interested in learning more about please let me know.

Are you going through anything like this? Are you struggling with health problems?

Katie xx
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