Learning to live with hating yourself.
I know that sounds like a really bad title. You’re not supposed to hate yourself, you’re supposed to be learn to love yourself and all your flaws or learn and change yourself to be what you want to be.
But what if you can’t change yourself. What if you can’t come to terms with who you are because it’s ever changing- who you are and what you can do, keeps shifting?
I have seen various Rheumatology physiotherapists. The thing that they say, every time that we part, is ‘Pace Yourself’. Ok. I’ll pace myself. But what is my gauge? Do I base my restrictions (because that’s basically what pace yourself means) on last week when I had 4 bad days and could hardly leave the house without agony, distress and debilitating fatigue or this week when I managed without crutches (although had help) and was able to do all sorts of things. What about when I have 3 good weeks and one bad week or 4 bad weeks and 2 good weeks. How do you pace yourself if you don’t know what the benchmark is?
If you want to know why I see a rheumatologist and physio, I explain it in here in My Story and My Story pt2.
I do try. My local play park is on my road. It’s less than a mile away. Once upon a time, hypothetically, I would have had no problem walking there, playing with my son and then walking back. Now I know that I can’t. I’ve given up on pride or a sense of achievement, I drive there, use my disabled badge to park on the double yellow lines as close as possible to the gate and take my son in. There is also an area where I can exercise our pup with a big game of catch if I can’t manage our usual hobble over the fields.
But then, do I pace myself on the weeks when I can use my crutches and my arms and necks don’t scream at me or the days when I choose the pain of my neck instead of my back and hips.
What happens though when the sun shines? I think most of my readers live in the UK and if you don’t you’ll know doubt know how rare a warm and sunny day is and we really go for it. We come out of hiding and make the most of it. You don’t take it for granted- if you’d planned a quiet day at home, that goes out of the window, cars are packed and you get out there.
When you have a busy boy who loves to be outside, you want to make memories. We play in or garden every day. Rain or shine. It’s also hard on a really hot day as it’s a sun trap with no shade.
When we get a get a good day we want to do something different.
What if you make plans to attend a once a year event- and the British sun is shining and everything is set, but a few things have cropped up beforehand. How do you stay at home and ignore the event, ignore the pictures on facebook of everyone else’s children loving it? How do you not go and deal with the sadness that you feel as you weren’t able to give your child that experience?
My baseline has dropped. My ability to do things has dropped. I don’t know if it’s long term but I do know that I have been going backwards, slowly, for a while. I don’t know how to pace myself anymore as I don’t know what I can and can’t do anymore. I’m struggling to retain the independence that I have worked so hard to achieve.
That’s when you learn to live with hating yourself.
Not who I am, I like who I am. I know that I am kind, caring, generous and loving. But.
I hate the limitations that it sets me. I hate the unpredictable nature of its short comings. I hate the debilitating fatigue and pain that sees me in bed for the afternoon and evening for the third time in four days.
So what crazy shenanigans have I been up to in order to deserve this?
I went for a walk. On my crutches. My little man took his bike and we had a stunning view and watched airplanes and gliders taking off and landing. It was one of the warmest days of the year ad at least the sunniest day to break rain recently. We took our time and I rested on every bench that I passed. I paused and stopped for an ice cream and sat down for at least half an hour before heading back to the car. We met lots of people doing the same walk. 90% of them were between 60 and 80 years old. They were all faster than me and told me how well I was doing…..
Late afternoon, I took to bed. I don’t always go to bed to sleep, but because it’s the only place that can offer me support for my pelvis and legs. I try not to go to bed as it removes me from my son (my mum cares for him in my home and garden in this situation) but my health is going backwards at the moment and I’m really struggling.
The next day, I was on my own with no help until 3pm. I took my son to our local farm where we have a year’s membership and everyone knows us, as it means that little man is very happy there and I can sit and watch him. It sounds lazy and I feel bad but he’s outside, healthy and amused.
However, despite my best efforts to conserve energy, we came home for our afternoon nap and I was unable to get out of bed again. My body felt like lead stuck in a bog. Thankfully, Mum was around to save the day.
The next day saw my little man with his Daddy. I spent the day in bed, sleeping. Ignoring the world outside and ignoring the pile of work that I need to do for the blog. However, I felt it was worth it- it would help me recover and get back to my baseline.
The next day saw a planned day out with friends. It was a one off local event. I thought I was ok. But, we arrived. The available car parking was miles away. My friend had never been there before so I couldn’t take advantage of the disabled parking as the event was massive and we would truly have struggled to find each other again.
So, we walked (crutches) we enjoyed the day and stayed about 4 hrs. Unfortunately, there weren’t many opportunities to sit- it was a pop up event in fields, so not many benches!
I came home and once again, thanks to my Mum, went straight to bed. I was in agony. Bad enough for me to have to hold back tears. Ice packs and hot water bottles were utilised and I spent 16hrs in bed.
This morning, we went to playgroup for less than two hours. I struggled to stay awake and the pain was high. On the way home and little man asked to make a chocolate cake. It pulled at my heart strings as we’ve not baked for ages. I try not to spoil little man but I feel that baking and spending time together, having experiences etc, is not spoiling. That’s quality time together.
So, we started to bake and little man was doing nearly everything but the standing was too much. Once again, as soon as I got them in the oven, I had to come to bed.
I am so fed up. I am sad, disheartened, and upset. I feel as though I am going backwards. Well, there is no ‘feel’ about it. I am going backwards.
My health has been way worse than this, of course, but I have worked so hard to regain my life. I’ve endured huge amounts of medication that have given me horrific side effects to deal with, in order to try and strengthen my body and my stamina.
I’ve waited and begged for treatment to improve my life. I’ve done exercises and followed advice. I’ve saught out private practitioners to help me and spent every spare penny that I could get together.
I’ve submitted to help. I’ve had carers to help me bathe. I undressed and sucked up that embarrassment in order to give my family a break. I’ve watched my family exhaust themselves and sacrifice their spare time for my son and I.
Yes, I know that they want to but I challenge any of you to sit back for 3 years and watch your family do everything that you should- that a normal person would- and not hate it. Not feel the overwhelming guilt.
Last year, I was granted funding for 6 Facet Joint injections (read about that here). I had to apply for funding as it’s a postcode lottery. The 4 hospitals within 50 or 60 miles of me all carry out these injections or refer people for them but because of my post code, not a chance. If I lived 10 miles up the road, I’d have been fine. Anyway I have the best GP in the world and I became the first patient that she had ever been able get funding for.
Because of how well the injections worked, my consultant surgeon prescribed Thermal Oblation. He told me not to worry, that I wouldn’t have to apply for funding. The next hurdle was to see the Pain Clinic consultant. Hurrah! He gave me the green light. He would be more than happy to perform the procedure that would permanently severe the nerves and block the pain signals, In fact, lots of patients travel to this little tiny hospital only 20 mins away from my house.
The only problem is my postcode. The surgeon was wrong. It’s such a straight forward procedure that you can forgive him, but my postcode means I can’t have the procedure.
My GP, again, fired off a letter to the NHS funding board. We had high hopes as the initial injections were diagnostic and they did their job and we know what will and won’t help and the permanent version of these injections, thermal oblation, will improve my quality of life drastically.
So what now? Due to having so many horrible things happening to me, I had pretty much come off all my medication. I had done this with the help of the injections and with gritted teeth. It meant that I have now been diagnosed with other conditions (once we found out that a lot of my symptoms were not in fact side effects) but as the injections wore off and the decision about the next procedure was taking time, I had to go back to the Dr’s and have my medication doses increased.
Now, the pain is getting worse and I am facing the prospect of having to go back and ask for more. I desperately do not want to as I know that my independence will reduce as the drowsiness and brain fog increase with the higher dose.
So this is where I am. Sorry about the moan. I am struggling and I began this blog as a form of therapy for me to work through my problems.
Thank you for reading