I had the double hip blocks two weeks ago (big needles straight into the old hip joints) and as of yet I think it's fair to say that was a massive mistake.
I knew it would be sore but nothing could have prepared me for quite how bad it would be! At the moment the pain is still worse then it was before. I am so over this!
One of the injections went in with no trouble and although it hurt like a *beep* it was endurable. The left side though, holy gajeebers, it took a lot longer to go in and was insanely painful. The team were wonderful and the doctor was fantastic, he knew that things weren't going exactly to plan and was very kind. I was wheeled back to the recovery room on the bed instead of having to walk (at the doctors request) and had to transfer straight into my wheelchair to go home. The journey back wasn't very nice. It took about 50 minutes and I felt every bump in the road! I told Tony to just go straight, no bends, no turns but you know he insisted on keeping to the road markings! Honestly! So unreasonable!! ;-)
I think because the left side was more complicated I some how ended up with really bad backache on top of the usual hip pain and although I'm still waiting for it to subside completely it isn't as bad as it was on the car ride home.
I had to use the wheelchair right up to the house and when I tried to climb the stairs my legs went and I stumbled forward, it became pretty clear that there was no way I was going to make it up the stairs so rather then a night on the sofa Tony picked me up, threw me over his shoulder (I say threw... he was a bit more gentle then that!) and gave me a fireman's lift up the stairs in to the bedroom!
That night I got two hours sleep in one hour intervals. The pain was so intense, weirdly my feet hurt and my wrists felt like the circulation had been cut off. I think it must be where I was tensing my hands and feet so much to help me through the actual procedure. Talking about 'getting through it' I laughed the whole bloody time they were injecting me, how ridiculous is that?! I guess when you're body is going through something kind of traumatic you can go one of two ways, cry and panic or laugh hysterically... well, I laughed hysterically and wriggled my toes within a inch of their life!!
That whole week the pain got worse daily, the third day was horrendous, it also happened to be our wedding anniversary and I pretty much cried all day!! My body was just exhausted and the pain was relentless. It was without a doubt the worst pain week I have ever experienced, including the week post op last year!
One day I sat and wrote exactly what it felt like at its worst, I felt like I was going out of my pain with physical pain penetrating every joint and I wanted to capture exactly how that is. I never share how I feel when I am in that state of mind and one day I will share it on here but it's going to be a really big thing for me to do. It's a pretty big thing, to share really how bad the bad times are. I can write about them like I am now with a clear head on reflection but this was me hammering on the keypad as my body screamed at me!
So it was 6 days in bed and I was too poorly to care. Normally that would drive me MAD but honestly, I couldn't muster up the energy to be bothered!
On the Sunday after the injections a friend of mine was having a party for the children which we were invited too, I knew my daughter would go anyway but I really wanted to go. I had been looking forward to it so much that I didn't want to miss it. The thing I have learned is sometimes I have to put myself through something physically horrible to pick my spirit up and this was definitely one of those things! We had a wonderful time and I had a good laugh. I am so glad we went.
The other thing I forced myself to do was attend our daughters first parents evening. It was the day after the injections and I was meant to be on strict bed rest but there was no way I could miss it. Her teacher had offered to call but I knew in a few months time I won't really be able to remember just how bad the pain was but I will very much remember missing her first parents evening.
I had to go in the wheelchair but I am glad we went. The feed back was wonderful, Amelia-Rose is doing great, she's made lots of friends and the teacher is impressed with how much she commits to a task when she's asked to do it. I'm not surprised but it was nice to hear, she absolutely loves being at school and has been ready for a long time. As of tomorrow she will be in full time which I am very sad about but she is super excited about. It's the end of an era and I am aware that never again will we have the precious time together we have had the past 4 years. I know we're on an exciting new path but god I am going to miss her. I have loved being a stay at home mother and spending all my days with her, crafting, baking, playing, learning, going on adventures to imaginary lands.
I think it's different if you have two children, when the oldest goes to school you begin the journey of special one to one time with the youngest but if you only have one you do everything just once. When you stop breastfeeding that's it, you won't do it again, when they potty train that's it you're done with nappies and when they start school that's it! 6 hours a day to fill.
I know most parents would LOVE 6 hours to themselves but it's just really daunting to me. I can't find a little job or finish my degree. I am going to try to do some more crafts and baking and of course keep writing and work on promoting my album but none of that will come close to spending quality time with Amelia-Rose.
On a positive note though I hope it will give me more time to rest so that the time I do still get with her can be really high quality. The pain and fatigue can mean sometimes I find Amelia-Rose a little intense which makes me so sad. I use to be able to match her energy and now I can't even come close. With all the extra 'quiet' time I hope we'll be able to do more of the stuff we use to because I will be able to distribute my energy more.
So, what else has happened in the past 10 days? Oh I know! On Friday we had an Autumn Celebration craft party. Amelia-Rose had 7 friends over and we did lots of cute crafts and played 'Pinned the leaves on the tree' The children all had a wonderful time and I got to be creative with my baking! I was so pleased with the way the baked goods came out! It was such a fun party and we (ok ok me) are already planning the Christmas one!
I have a hospital appointment in London this week, we are travelling to stay with my grandparents in Swindon over night Thursday and will get on the train to London Friday morning. I am feel ok about this appointment because I've already met the Dr and although I hate being away from Amelia-Rose it should be fairly straight forward.
I also have an appointment in London the following Friday and I am most definitely not ok about that one. For one thing it is a peak train journey so if we do it it will cost us £250 in train fare alone. It's such a lot of money and you just know the train is going to be packed which isn't so nice when you're sitting in a wheelchair!
I don't know why I have such a mental block about this appointment but I literally cannot talk about it. Tony and Dad need to know what I want to do about getting there but I just can't talk about it. I panic. Really panic.
The other option is to drive from here to Reading maybe do some shopping, spend the night in a hotel and get the train from there, the train would be much cheaper but it's then a three and a half hour car journey which will be horrendous. I think that would be a desperate attempt at making the whole trip 'enjoyable' but because of the experience I had at Reading hospital last year Reading isn't exactly a place that fills me with joy!
I think maybe because it's also meeting all new doctors and to talk about the hypermobility syndrome I am really nervous.
This is all hard enough without having to travel SO far. It's so overwhelming. I find it very difficult now a days that I don't feel in control of my emotions. It is as if something takes me over and I lose my sense of self, like someone has inflicted these emotions on me and they are so out of proportion. I really do miss just feeling like happy Clo. I can't describe what it is like, but when it comes on I just want someone to grab me and cuddle it out of me.
I have found a lot of comfort in the book 'Bending without Breaking' A guide to living with Hypermobility Syndrome written by Isobel Knight. It's really helped me realise how many of these things are down to the syndrome.
I'd like to share a few quotes with you...
"There is, it seems, a link between the instability associated with HMS and the range of bodily symptoms, anxiety and general psychological distress." (Knight, I (2011). A guide to living with Hypermobility Syndrome. Bending without breaking. London: Singing Dragon. 141)
"State anxiety may be defined as 'feelings of tension and apprehension, associated with arousal of the autonomic nervous system', and trait anxiety refers to 'a general disposition that certain individuals possess to respond to a variety of (relatively unthreatening) situations with high levels of state anxiety. Sources for trait anxiety and to a lesser extent state anxiety were significantly higher for subjects with HMS, suggesting that HMS could be linked to an innate form of excessive response to fear" (Knight, I (2011). A guide to living with Hypermobility Syndrome. Bending without breaking. London: Singing Dragon. 141)
You see, I can read these and clearly see that it would appear my feelings of panic and anxiety (which ultimately lead to feeling overwhelmed and sad or cross) but that doesn't make them feel any less real when I feel them.
Another paragraph that also sticks with me is "HMS is a disorder that robs patients of control over their lives. All chronic illness and chronic pain cause feelings of loss of control. The problem is exacerbated with HMS because there is not always a clear link between an activity and the onset of pain" (Gurley-Green, 2001, p.488)
It explains why I feel like I am drowning as soon as London on the 15th is mentioned but again, it doesn't make it any less scary. All of these hospital appointments are so bloody stressful anyway but throw in a very long journey and a huge amount of money and POOF *la la la la la la la la la la la la* *I can't deal with this!!*
Right, I really have to go! First early school run tomorrow!
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