What CP is like for me

This is my contribution to a project of a new charity – Adult CP Hub.

Adult CP Hub

They are looking to bring awareness to how damn hard it is to age with this condition and I need to get behind it or I’m doing myself and my baby a disservice. I really look forward to seeing the finished film.

I wanted to share my video because it’s the easiest way to articulate some of the struggles I am having at the moment. This, right now, is me.

Please excuse my wonky eye… that would be my squint, I promise I am trying to look at the camera!

The Twos are Terrible

Squidge is 21 months now. She is much more physical and opinionated, oh the Terrible Twos have arrived. I cannot begin to articulate how much harder being her caregiver is. There was the planking incident when I tried to get her back in her car seat at the supermarket, the throwing her weight down as I carried her upstairs for the nap she wouldn’t admit she needed. She cries every night now when we leave her in the cot.

I ache constantly. I’m sleeping terribly. I’m so horribly anxious that Squidge’s every upset is my fault, that I’m failing her. I went to the doctors today and said as much. She was very calm and kind, told me that I will always be Squidge’s normality and I shouldn’t give myself such a hard time. But how can I not when I was seconds away from cancelling the damn appointment in the first place, because I didn’t think I’d have time to dress Squidge, get her in the pram and get to the Doctors without being late. I couldn’t stand to be late, because then what would people say about me?

I know logically, the answer is nothing. No-one really cares about other people as much as we imagine they do. But everything, everything is overwhelming for me right now. I know this because I sat at my desk this week and could feel myself drifting away. It was like I was trapped behind glass, watching my world happen around me in slow motion. I had no grounding in the world and I am pertrified of losing the control I have on my own life.

I am really struggling with the changes I have no choice but to make if I want to keep any semblance of a life going. Kev & I have agreed that come my first review next year, I am going to decrease my hours. I’ve had the discussion with my boss, who is so accepting and easy-going about it all, even when I essentially said: “I’ll have to quit in a few years anyway, but please let me do it slowly.” He lets me work from home so I can sleep in, he doesn’t blink if I finish early because of pain or because I’m still nervous about driving in heavy traffic. I’m very lucky. Because I don’t want to give up work. I take pride in the fact I can have my own money.

But it was Kev who made me see I’d have to sooner rather than later, that it wasn’t worth giving up my life over.

So there’s work. That’s going. Although I plan to swap it out for a Master’s course, so maybe it won’t be so bad, I’ll still have something that is mine.

I don’t take care of my own home. We hire a cleaner once a week and my mother in law insists on doing our ironing because I’m too terrified of my tremors around a hot iron to dare.

My in-laws were away last week and my God, it was so, so hard without them. Support networks are invaluable people. I was in tears every day, Squidge was asking for them and trying to make them cups of tea in the kitchen. I started to wonder, could this really be my life if I were a stay at home mum? And it seems that both Kev & I agree, no, it couldn’t. These are the reasons I so absolutely need Squidge to be that much older before we plan the next one, and we so want the next one.

People seem to think they’re being funny or helpful by telling me it’s best to have your children close together. It’s not best for me, but no-one wants to hear that bit, do they?

I’ve decided that Squidge will go to playgroup on one of my days off so that I can have time to myself, for a bath or a massage to sort out my muscles when the pain gets too much.

She’ll enjoy it too, more children to get to know… even better that it’s local and she might grow up with these kids. So why do I allow myself to feel so terrible about it when there’s no downside?

The in-laws came home and the next night, they had Squidge overnight and Kev & I went out for dinner to celebrate our 3rd wedding anniversary. I had a bath and preened, had my dress all ready. And then I went for an afternoon nap before our 6:30pm dinner, because this is just how I have to do things now if I’m ever going to be able to see the night through.

“Next time, bring her in leggings! “

Squidge had her 8 week jabs yesterday. She’s 11 weeks old on Wednesday but that’s another story. I hate needles though I hope the number of needles that were necessary through pregnancy cured me somewhat. I didn’t want her picking up on my anxieties so I had a lot of questions. 

How many injections? 

5 and oral medicine.

Can I feed her to distract us both?

No. By the time you get her on the breast-

I’m not breastfeeding  (and lady, you shouldn’t assume)

Still no. Put the pram here and sit there.

I had to carry her across the room. When I do that, I need a second to safely plot my course around the room. I wasn’t even allowed that second. I tried to sit in the nearest chair – the nurse stepped into my path and pointed me to a seat further away by the window. 

I’m sure she was just being efficient. After all, there’s always lots of babies that need vaccinating but in not giving me time – time even to explain why I needed time! – I felt rushed and stressed. 

It didn’t get better. Squidge’s cry at the first jab was her first ever one of pain and broke my heart. The nurse simply spun her round to get to the other leg and then give the oral medicine. It all happened so fast that I didn’t have time to try and support her head to receive the latter, even though the nurse was asking me to hold Squidge’s head up for her. It made me feel useless.
I’d dressed Squidge in a zip up sleepsuit. They’re the easiest thing for my hands. I’d exposed her legs for the jabs as requested but the nurse couldn’t find one of the legs on the suit to dress her again.

“This is no good. Bring her in leggings next time!”

I felt angry. I wanted to be able to explain about my disability but the whole experience so far just told me she wasn’t going to afford me time!

I managed to splutter: “It’s all I can manage.”

But of course, it wasn’t my notes she was reading,  that meant nothing to her and I was herded out for the next baby.

As I walked home I realised that dressing Squidge in a two piece was no good either. My stork-parcel lifting technique only works with sleepsuits. So no, I won’t be bringing her in leggings next time. I’m her mother, you can support my damn needs and decisions. 

As it turned out, most of the mothers I know said they dressed their babies the same way as I did for their jabs. So I wasn’t in the wrong. 

But of course, there will not be time to say all this “next time”. It’d be much better to wear a sign. I’M DISABLED… PLEASE GIVE ME TIME TO CARE FOR MY BABY. The absurdity of that would make them pay attention wouldn’t it?

Not that anyone seems to care. Squidge is almost 11 weeks old and I still haven’t had my 6 week postnatal check. Apparently that only covers my contraception choices. But I desperately need to use it to get pain relief and maintenance remedies like acupuncture.

Managed to book it for next week.  Fully expecting the nice qualified doctor to stare at me blankly when I ask or try and make me make another appointment. I hope I don’t lose my temper because I know I’ll burst into tears and probably get told I’m depressed. 

But I’m not depressed. I love being Squidge’s mummy.

I ache all the time.

I just want someone to help me.

I was in a fair bit of pain when we got home. I put sleeping Squidge straight to bed to rest and went back downstairs to put the pram away.

My whole body protested at this. I got the frame wedged in front of the open door’s edge and couldn’t close it without taking the frame down from the wall again.

I dropped it on my head. It hurt. I felt helpless and sobbed to myself at the foot of the stairs.

I’m in too much pain to take Squidge to baby massage today. Prepaid so I’ve wasted nearly a tenner and feel like I’ve let her down.

I know she doesn’t care really. She just wants me to hold her and feed her and tell her she’s beautiful until she goes to sleep.  I love doing all of these things.

But she is going to need me every day. Of course there is no let up with children. But that means there’s no recovery time and pain will build on pain. How am I supposed to live like that?

And will anyone believe that my frustration and desperation isn’t because I’m struggling to be a mum? Will anyone help me or just write me off as a mental case that shouldn’t have had kids in the first place?

I just want someone to help me manage my pain. That’s all. Someone to understand and not rush me.

But until then, I still need to get through the day. To provide for my beautiful girl.

And it’s so damn hard.