Month: February 2024

Lessons and love.

I’ve just had a wonderful therapy session. I feel I’ve done my ‘growth’ and learning. Now my focus is on putting it into practice and continued therapy on a 5-6 week basis gives me a place to go where I can discuss what’s been going on, my wins and losses and where I can improve. Having that place to touch base helps me reorganise my thoughts and identify where I’ve fallen short without fear of judgement, especially from myself.

Recently you’ll know I’ve been far too active and as a result I’ve been feeling awful. It also means I’ve been feeling horribly disconnected from everyone as I haven’t been able to see people regularly. The isolation is real ya’ll!

It seems as though I feel like I’m making good progress and getting myself into a stable routine and schedule that I can maintain. Then something comes along – like ordering a bed that arrives super fast, where all routine is lost and I feel I have to push through and do so much. That breaks my good cycle and it’s hard to get back into it or even see that it’s happened. That’s where I’ve been, I didn’t realise what had broken the cycle or that it was broken and that’s why I’ve been feeling out of sorts.

Now I’ve identified I can focus on getting back into healthy routines of one task or one social visit per day (not both) followed by a rest day which can include self care, like a bath. I have to keep myself healthy so I can have a few visits per week, which in turn keep my mind and soul healthy, which make me feel better and lighter. It all impacts each other and I need to be extremely mindful of that. I cannot cram and then crash – it’s very bad for my mind and my overall health.

This also means that the safeguarding course that I’m doing needs to be tackled differently to how I studied as a teenager. I cannot pretend I have ages to meet deadlines and then cram everything in last minute. My health cannot take that type of learning. I never really learned how to work any differently growing up, but now I must break this pattern for the good of my health. Because this course and my volunteering mean so much to me that I must make them achievable and accessible.

I’ve also been exploring other treatment options further and will hopefully be taking further steps towards that this week. To take control of what I can, where western medicine is not helping.

I also wanted to share some lovely experiences I’ve had. Friday night I went for dinner with friends, despite feeling horrendous and not up to it. But I had to eat, right? It was wonderful, the food and company were great and I felt so connected. It was exactly what I needed to break my cycle of misery. It meant I felt up to doing a few bits on the weekend so double win!

Yesterday I finally got to see Hannah and Ivor after several weeks. Not to mention my doggy bff Ed. I feel to have such an incredible connection with each of the people in my life, a different connection with each that gives me so much. I feel so full and wholesome when I can maintain these. Ivor has grown so much, he’s wonderfully healing for the soul with his big beautiful eyes and inquisitive nature. And I felt pretty good yesterday, or my version of good, which meant I felt so present and had a really deep catch up with Han. I’m incredibly grateful for this time, it’s rare I feel as alert as I did and it made our time together even more special for me. And of course my man Ed, I feel we just get each other, which means I get to see his happy wriggling butt whenever I go round and celebrate him being the best big brother by giving him a bottle to chew. Simple pleasures that make him wriggle extra fast with happiness. I’m grateful to have spent an afternoon as happy, fun Auntie Chlo. I title I will cherish forever for all the children in my life who make me feel awesome. And even managed to squeeze in a really nice visit with my Grandma before my inevitable crash!

I feel, despite breaking my healthy routine, I’m making positive steps. To be able to identify the cause of my unease and actively work to get back on track to maintain my health, to then maintain my connection with those I love and who love me. For now that is my purpose, and it’s the best I’ve got. And right now that enough. It’s more than enough. It’s not what I once had, and that’s sucks, but right now it really is enough and I’m grateful to be here for it. I was meant to be here for it. These lessons and connections are what I am meant to be here for- they are my purpose and goal now.

Out of whack.

I feel a bit out of sorts at the moment. Like I’m constantly trying to catch my tail. My head seems to be a bit more stable, which is a good start and a sign that this programme is starting to perhaps take effect. I’m still not able to adjust I don’t think – I’ve lost track of time if I’m honest. But as I am allowed to use the constant programme, I’ve experimented by turning it on when active and I must say the consequences of the activity are significantly reduced.

But still I feel out of sorts. I’m restless, yet I desperately need to rest. It’s like I have adrenaline coursing through me that just won’t allow me to properly stop. I’ve been too busy of late, something that’s been out of my control. Following the great clearance of my room and my new bed I had to catch up on my safeguarding course. I’m doing it as part of my role with UKCVFamily, and, while thoroughly interesting, it’s quite heavy and highlights the extent of my cognitive decline. It’s not been easy, but I’m getting there. Thankfully the funding college is very supportive and allows me to extend deadlines to allow for the excess downtime my health demands. So I met my deadline last week for unit 1, and then had a few days of deep suffering before going to see my brother on the weekend. It was a great day and I love seeing him and his family, especially when there’s a roast beef involved! But the 5 hours of driving killed me off. Sunday I rested, ready to take Bella to Bristol on Monday to have her very expensive eye checked out. It’s still stable so that’s fab news! Yesterday I took mum for some tests and now I’m in bed. I’m desperately trying to rest but I feel out of sorts and fidgety. A bit like when you’ve forgotten something but can’t put your finger on it.

When I’m like this my tremors and shakes are worse, and I get easily frustrated with myself for making regular typos or being clumsy. Though it’s not really clumsy, just normal function through the tremors isn’t so easy. On these days I normally decide the kettle is out of bounds, though I often don’t notice that I’ve poured boiling water on my hands until the next day when I wonder why they sting a bit. So it’s easier to just stay away. I am frustrated, I need to be studying and getting on top of some admin, but I also know my body needs to rest and whatever I do will only infuriate me further. But the buzzing feeling inside just won’t go away, though it won’t go away if I do something either. With this I do also feel a strange sensation in my head, a little woozy is the best way to describe it. Dizzy but not dizzy, faint but not faint. Strange, but I wouldn’t be me if I wasn’t a little strange.

These are some of the things I’ve been unsuccessful in getting help or assessments over. My main focus since the V had always been my head pain because it really was the most overwhelming issue. But I have been trying for over a year to get some answers and help on the rest, to no avail. So for now I just have to accept being buzzing and also useless!

On the bed – I’ve not once had issues getting in and out of bed. No more grunting and straining, no more crawling to the bathroom. It’s been the most wonderful investment into myself and I’m glad I spent the money. It seems minor, but it really did use up excess energy to get myself up or down, so being able to eliminate that struggle has had a huge benefit. I bought a rather large footstool, which helps both Bella and I onto the bed some days. For Bella everyday as she’ll do a damage jumping from this height, and despite the dementia she seems to have finally accepted using the stool.

I think the biggest win is the help that I got from Kalie and Laura to clear my room and make it a much cleaner, clearer and manageable space. Every day I’m able to reset my room and within minutes it’s clean, tidy and calming. I also get to reset my bedding daily which not only helps me in my OCD but also means I’m getting a little exercise in everyday. You may laugh at thinking it’s an exercise, but some days even just going downstairs to grab a drink registers as intensive exercise on my Garmin! So all in all it’s a win and I’m grateful for all the help I received as I can now manage to keep this space the sanctuary I need it to be. My dad also came and put my tv on the wall so I could ditch my desk, clearing the space of more clutter. I do need to make a new shelf to go under the tv, but it’s not a necessity right now. I made my other scaffold shelves and know it won’t take long to sort another, it’s just not a priority worth spending spoons (or money) on.

Most importantly, I now no longer feel my wonderful candle collection is a waste to burn on a messy room. I always felt my room and the chaos it was didn’t deserve to have good wax wasted on it. Now I get to burn all the lovely scents I’ve collected, though it’s still hard to choose from my 30+ candles. But now it doesn’t feel wasted as sanctuaries deserve a calming scent to match.

So that’s where I’m at. A lot of ramblings about nothing in particular as I’m feeling out of sorts and my thoughts aren’t particularly coherent. I hope you’re all well, and I must apologise as I still haven’t managed to catch up on my messages. In truth everything has fallen behind, this is actually the first thing I’ve written since my last post because I’ve just been empty with nothing left to give. I will catch up and I’m grateful for everyone being so patient and understanding!

I’m still standing.

I should probably let you all know I’m still alive – I know my posts showed I was in a dark place and then going MIA isn’t great. But I’m here and in a slightly better place mentally.

Wednesday I had reprogramming. I now have two programmes – one in the background of my head (root of the nerve) and one on the side (to cover nerve branches). I have to stick at the current settings for 3 weeks. If then I still don’t feel an improvement I can switch to every 3 minutes. If I then get overstimulation pain I can turn back to every 6 minutes until it settles. On worst days I can also turn to the continuous programme for a few hours in the morning – I’ve done this a couple of times since and it has helped a little! I asked if it was normal to switch between programmes and was advised that they have a patient with a day programme, night programme and a programme for when they are in public. So basically there’s a lot more we can try but I have to trust the trial and error process. It didn’t stop working because of the cutting out (that’s a normal due to nerves moving with the head and therefore not having full contact at all times). It stopped either because my body got used to the stimulation or it decided it was too much stimulation. So I’m trying to trust the process, even though I’ve still been confined to bed since. My pain is more steady with both programmes, still too high, but less additional stabby pains. So I guess it’s not all bad!

My greatest news is that I have finally reached my savings goal and yesterday I ordered myself a new bed. One that I’ll hopefully find easier to get in and out of, one I’ll be able to change the bedding myself on, but also one that’s an ottoman so I can hide some clutter from my room and make it homely and comfortable. Cause it feels like I’m living in a car boot sale stand right now.

I don’t really think there’s much else to report on so I won’t bother waffling. But I didn’t want to tell you about a book I read by a friend, Caroline. Also V injured, she has achieved many things in her life, including being the co-founder of UKCVFamily the group I volunteer for. One of her other achievements was her efforts in supporting the peninsula that was devastated after the 2011 tsunami in Japan. At the time she was living in Japan herself. She wrote a book about it called One Month In Tohoku. It was incredibly inspiring and was really what helped raise me from the dark place I have been in. Well worth a read if you’re interested in hearing about the spirit of the people who were impacted and all Caroline managed to do to help them and truly become one of their community. I’m incredibly proud to know her and be a part of the group she has contributed towards and continues to fight for. A truly inspiring lady!

So anyway that really is all I’ve got now. I’m grateful for all who have checked in, and I will get back to you when I have a bit more energy! For now I will continue to rest and continue my quest to find more treatment options that may be worth trying and how I can fund them 🤍