I feel I write about my overall feeling and not about what’s contributes to it, aside from my situation. I wasn’t even sure I wanted to write again, but I spoke to Hannah this evening after she read my blog. I’ve been honest with those around me about the fact I’m struggling but not to the extent. It felt so good to be fully honest, in an open space where there’s never been so much as an ounce of judgement.
It’s not that I don’t want to be here anymore, it’s that I don’t want to be in this here. I don’t want the here that has all this pain, this exhaustion and hurt. I wish so much that I was free to live again, to experience life and all its beauty. To go to work, to make any arrangements I want without a second thought about there being any consequences. I want to travel and love, to explore new places with Bella every day. To run along the beach with her or have a cocktail night with my friends. To love and trust my body again.
With having no idea when I’ll be seeing the surgeon for a consult and no sign of my pain clinic or hydrotherapy referrals it means I’ve lost a timeline. Before it would be that I’d just have to make it to ‘this’ date for that appointment, then the next date and so on. Now all I have is ‘just two more days until I see’ whichever friend I’ve arranged to see, or whatever is in the diary to do. These are my new life lines, my new goal survival dates. Putting that hope onto social events puts so much pressure on them, that when they get cancelled I’m not just a bit bummed. I’m fucking devastated. Social events get rearranged or cancelled, it happens. Work shifts change, something comes up that needs to take priority, people get ill. It happens, so I try not to put too much pressure on the event to be my lifeline. But I do, I don’t know how to control that. It also means that I drive or continue to do social events that I myself am not up to if I’m having a particularly bad day.
A standard day in my life looks like this – wake up 7-8am, pain 8/10, let Bella out, do Bellas meds, do Bellas breakfast, make coffee, take my meds, return to bed. I don’t return to sleep, I lie in a dark room with my kindle after 5-10 minutes of stretches. Get up again around 11-12, make a tea and head back to bed. (On a bad day I will also take extra meds at this point. 3-4 days a week my dad and I will meet either at mine or his for coffee or lunch and 1 day a week walk Bella). Anyway…back to bed to read kindle, I try to paint but usually only manage this for max 2 hours a day or two a week. Then read again until 4.30/5 when my mum finishes work. Then hear about her day, switch off from too much detailed info, then sort dinner. Most days this is mums doing, at least once a week I sort dinner, usually something simple to manage, ie pans and woks and not the oven. Then we eat and tidy up. I take more meds. We watch 2 episodes of whatever series on the tv until 9pm. Let Bella out, give Bella her meds, tuck Bella into bed, tell her ‘night Bells, I love you’ and then get into bed. Some nights here I add in stretches, on the others I meditate. Lather, rinse, repeat.
Can you, just for a moment, imagine how fucking boring that is for just one day. Let alone nearly every day. Imagine that being the most you are capable of each day without risking more pain.
Then you add in some seasoning – how each day climbing or going down the stairs seems to get harder. The stairs get steeper or higher. My knees feel like they want to pop out at each riser. Then the pressure sores I get from being led in bed so long (but this makes a huge difference to my pain), so have to ensure I regularly flip over. Flipping over sounds easy, but then you add in the intense back pain. I badly injured my back lift a few years back and this pain has returned and makes flipping a significantly more arduous task. It also means that I walk at the same pace as a snail. If I take too big a step of go off balance this causes twinges in my back. But like most joint conditions some days are better than others, so catch me on a rare good day and it looks like I’m walking normally. Also as a result of my joint issues occasionally I have to pop a shoulder back when I wake up in the morning. These joint issues were resolved by weight training, it’s why I started it. After being told I’d probably be in a wheelchair by 40 I decided to train my muscles to support my joints. Now I’ve seen a lot of muscle waste I seem to be back on that trajectory. Then you add in the movements that cause a surge in my head pain. This includes the movement of my head from walking, bending down to pick up something I’ve dropped. This has to be done as a squat while holding something for support so I’m not bending forwards. The need to have my head supported when led or sat down, or again see a surge in pain. This is a huge part of why I end up with a 2 hour time limit on social events. Then the motor skills affected by my meds that can make using a knife a hazard, particularly if something requires chopped onions or other things cut small or small items cut. It also meant that I’ve had to repeatedly practice handwriting exercises because I couldn’t control a pen any better than a 5y/o. Then the fact that my pain and my meds mean my mental processing speed is reduced, I don’t have the mental agility to do my job even if I could concentrate through the pain. I mix words, stumble over sentences and can often take me two or three times to get a sentence out.
All these things have become a part of my daily life. Allowances I make that I don’t even have to think about them anymore, in fact I’ve probably missed a fair amount of what has become routine or habit.
I think this is what I struggle with when discussing my health, is that it’s not just a bad headache. These things often aren’t seen and I can confirm I rarely discuss them. All of this is why I struggle to want to be in this here. Because this here is fucking hard work whilst it’s also doing absolutely fuck all. I’m not certain I’ve ever truly explained that except during health assessments or appointment. But how could anyone want to have the above as their groundhog day with no known end date? What would you do to cope with that?
Anyway I want to end this entry with a win I didn’t share last time. Aside from clearing my room and binning a whole bunch of crap, it’s also been 4 days since my last cigarette.
HC & Me 