Tag: support

A big decision for a little lady.

I had an interesting therapy session yesterday, in which we discussed the idea of me being ok and mostly stable. Of course I struggle, but it’s part of the human experience, and when you’re faced with so much it’s natural to struggle at times. But I’m also certain that I will get through it, even though in the moment it can seem impossible and scary.

That’s why I write everything here, the struggles and the triumphs, because that’s exactly what life looks like, particularly when you’re dealing with chronic illnesses. Because ultimately, I cope with things very differently now and have to manage my limited capacity to cope and take more things on board.

We discussed everything from what I’ve introduced that’s been beneficial (or not), what my diet is looking like, how I’m sleeping, where I’m at with medications and the process of removing some of them, and what’s been going on in general. Which led to the discussion on whether I am now in a place to invest in my physical health instead of my mental health.

If I’m honest it’s a scary thought to leave therapy behind. Even having sessions 5-6 weeks apart, more as a check in, gives me a sense of security. A check point and a place to discuss any decisions I need to make. So the thought of leaving Lee behind, though I can always have ad hoc sessions or go back fully, is quite scary after 4 years together. She really has been there through it all like a guardian angel. Something I’m incredibly fortunate to have. I also hate change, it’s uncomfortable and makes me feel less safe and can often cause disproportionate meltdowns (Or disproportionate by others standards) and has done since I was a wee dot. But my need for control, and no change, has increased since becoming ill – controlling what I can because everything else feels out of control.

But with my bills for Bella increasing I just can’t make the math work to pay for therapy and kinesiology. It’s clear that western medicine is not helping me. I know I have to continue fighting the NHS system to get answers on what I’m dealing with, but I also believe it’s not the system to help me get better. I need them to give me the answers, but my body does not respond to their solutions. Which is just more poisonous medication that does more harm than good. So I think, I know, the holistic route is likely to give me better results and better understanding.

The medication I’m due to start reducing is pregabalin. It’s fucking awful and I feel for anyone that’s had to or still does take it. But the withdrawal is likely to be a struggle, and I will likely continue to struggle once I’m off it as there is no alternative option. The reduction rate my neurologist has suggested seems rapid, and she warned me it wouldn’t be a nice process. But the support groups for this drug warn of the withdrawal I will face and suggest a slower reduction to help my body and brain better cope with the withdrawal symptoms. The safer, more manageable approach seems the obvious option as I don’t wish to increase my suffering more than necessary. So I need to discuss this with the doctors on Friday, as it really is a nasty drug and withdrawal from it can be a brutal process. Much like withdrawing from heavy recreational drugs, because of the type of drug and the way the body and brain depend on it, it can also cause psychological disorders. So I’m concerned and nervous but this isn’t a drug I wish to take anymore, it’s ultimately detrimental to my health and wellbeing.

I guess this will also play a factor in my decision on whether now is the right time to drop therapy in order to invest in my physical health. Ultimately I won’t know what sort of withdrawal I will face until I start the process.

I have an incredible support network around me outside of my therapist. My friends and family are so supportive and I know I’ll have them to lean on throughout this process of withdrawal and leaving therapy behind. But my greatest fear is will it be enough? I’m still not good at asking for help. Often I find myself reaching out to friends and family later than I should be. I still fear putting my shit on other people when they have their own lives to navigate, especially as my mind likes to remind me it’s always the same shit with me. The saying ‘old habits die hard’ couldn’t be truer for me in these situations. But perhaps this is another test, another lesson on putting into practice what I have learned these last few years.

I feel good for the session, and I think it was a worthy topic of discussion both with Lee and here – my journal of processing. But I need to dedicate the time and think about what I want to do, knowing that at any moment I can contact Lee and get back into therapy. I always have a back up there and perhaps that’s all the safety net I truly need.

Life continues and we cope.

There’s one undeniable truth that cannot be escaped from, no matter what you’re going through. Life carries on. The world keeps spinning, normal life ‘stuff’ happens, whether you have the capacity to deal with it or not. Sometimes it all happens at once, and you can think you have the worst luck, but all you can do is find ways to cope.

For me and my family, we feel we’re dealing with a lot right now. This isn’t a sad post, or it’s not meant to be, because for the last few days I really feel like I’ve been coping and I like that. Despite the rubbish stuff.

Each day I grieve for people that are still alive. That’s what happens when faced with diseases like dementia, you lose a little bit of them each day and you grieve that. You have to grieve that, whenever it comes up, so that you can cope. I’m grieving both my Grandma and Bella, both victims of this terrible disease.

It’s incredible hard saying goodbye to someone you’ve known your entire life, who taught you that you can and will get through anything life throws your way. And to Bella, who has become an anxious, distressed and sometimes angry dog. She’s never been that way, a little more anxious than most, but manageable and I worked tirelessly to make sure she never had anything to worry about.

But sometimes you cant stop the little sad thoughts that pop into your head. When I see my Grandma, and she’s lucid, she’s happy to see me. She knows she loves me, but I’m not sure she knows exactly who I am to her. I wonder, when was the last time she saw me and knew I was her Granddaughter? And I worry that every time I leave that I won’t know if that’s my last goodbye. Truth be told I’m finding it incredibly difficult and it’s a real internal fight to go and see her. Which I know sounds incredibly selfish, but when I saw her last she didn’t even acknowledge me, she looked at me like an intruder and not someone she loves. But I stayed, her carers left and I continued to stay. I eventually went to leave, quite a while later, and the living room door woke her. I immediately heard ‘Oh hello you!’ And I spun around, pretending I’d just arrived and enjoyed a few minutes of lucidity with my Grandma, until she drifted off again. I know I will continue the internal battle, because those few minutes of being someone she loves are worth taking the chance.

I’m having a little similar with Bella too, who’s now quite deaf. I have to use sharp sounds and voices to ensure she hears me. In the mornings, if she hasn’t already woken, I have to go and gently wake her up until she makes eye contact and is suddenly ‘in the room’ with me. Then I have to either use a sharper voice, which I dislike, or rely on hand signals to get her to understand what I’m asking. I think that’s why training is always done with hand signals and commands, so you still have something to rely on if they lose their hearing. But Bella doesn’t understand a lot of commands anymore, not because she’s deaf, but because she’s forgotten. And then a sudden thought pops into my head: ‘when was the last time Bella heard my voice?’ Not the drill sergeant I have to be so she can hear me, but her mum who used to sing to her to calm her down during the thunderstorms she can no longer hear.

So I’m having more regular therapy, I’m processing my grief both in private and in front of others. I admit my shitty thoughts and feelings because I know I’m not alone with them, and sometimes it takes another to speak up for others to feel safe with their thoughts. So I do that, because it helps. And when a large portion of your network are struggling, the best thing each of you can do is look after yourself and find the ways that help you cope. And while I am regularly feeling like I’m at capacity I also know I can and will get through this, by facing and processing things when they come up. By showing up for those few minutes with my Grandma, as someone she loves, and by showing up for Bella every day. By working with her dementia and needs, by doing what I can to keep her calm and doing my best, including not showing her just how frustrated and tired I am when I have to manage her crying and tantrums 24/7. It’s what I signed up for. It’s what you do for love and family.

Truth be told, I’ve been taking a concoction of supplements and regularly switching my stimulation programmes and I am feeling ok. I’m not good, I’m quite far from good. But I don’t want to rip my head off most of the time and I feel like I have a bit more useable energy so I am able to do a little more. I still have days I can’t do anything and others where I over do it. But I’m trying to stay focused on pacing, not just to manage my energy, crashes and pain but also my mental and emotional health. I think this is starting to contribute to me being able to cope a little better at the moment.

I also had to have my daith taken out for my scans last week. It was put back in today but I left with a hole in my nose too. Because sometimes self-care is making split second decisions, a reckless investment, because you just kinda fancy it. Waste of money? Likely. Did it make me smile? Absolutely. Sometimes it’s spending extra on supplements and dog groomers, other times it’s pointless shit like nose rings. There’s no rule book to self-care. So now I’m off home to disappoint my family, because at 30 you only need your own approval.

Thieves and fun.

Today is a good day. Things have been pretty dark and heavy of late. It’s been a lot to deal with, family health scares, my grandmas decline, Bellas decline. It’s just been a lot of stress and I’ve been feeling constantly at capacity and overwhelmed. Today felt light.

Wednesday I had to have an emergency therapy session. Like I really HAD to have it. But today, Bella had the vets (also last minute) and she’s fine. Her extra crying isn’t pain, it’s anxiety and dementia dramatics. So we’re adding a supplement and will see how she gets on over the next month. This was a huge relief, I really thought I was going to be having a harder conversation with the vet that I was not ready for, but feared Bella was. She isn’t. Afterwards, she tore through the pet shop and I ended up with an arm full of bits we likely didn’t need, but she’s mischievous and kept taking things off the shelf. In my euphoric state I just couldn’t bear to say no. She doesn’t play with toys and never has, but she ran off with a hideous pig and then a bag of sausages. So I added a shuffle mat and some low cal treats to try and add more enrichment activities to her day. Then she tried to manipulate a little boy into giving her a box of fish food he was carrying and I had to (literally) drag her away from the Guinea pigs she was trying to drool over. This is NOT how she used to behave, she’s always been well mannered and has never been a thief, but that’s dementia for you. And to tell you the truth, I thoroughly enjoyed our journey round the shop because she was having a great time and I just can’t help but laugh at her childish antics sometimes.

I got home and set up the mat for her, which Pru happily tried to join in with. Snuffle mat was a hit but took less than a minute to empty – shock! Then I spent the afternoon with Darcy. A last minute coffee date which I didn’t realise how much I needed. It was nice to just get away for few hours, with my good mood, and just be normal and catch up and laugh and play with Bear. Darcy always manages to make me feel normal and in my state that’s an incredible rare feeling, but she also reminds me that I get to laugh and have fun. I’m still deserving of that, and I’m so lucky to have the friends I do who remind me of this.

I really do feel like today has been lovely and full of more positive experiences and news. I’ve come home and had myself a little rest before we decide what to do for dinner.

At the beginning of the week we went through something scary and that has left me with in a bit of a state. It’s turned out ‘ok’ but I am still dealing with panic attacks and flash backs. But today they felt less controlling and that has helped make today feel lighter and like I could finally breathe without this pressure in my chest and weight on my shoulders. It also helped that my pain was around a 4-5/10 for most of the day.

I really needed a day like today. A glimmer of hope and joy. A reminder that even when everything seems to be going wrong or like the world is conspiring against us, there are still good days and good moments if you’re willing to let them in. Even more if you open yourself up to accept help, love and support from those around you.

The circle of life.

Right now I am fully at capacity and falling into old habits of bottling everything up and trying to make sure I don’t spill my situations and emotions on other people.

My grandma is deteriorating and slowly transitioning from this life to the next. It’s incredibly painful to watch and have such up and down visits with her. I will of course keep visiting because those fleeting moments of the Grandma I know are so valuable and I will savour every one of them. I also want to be there for her, for what is likely an incredibly scary time. Even when she tells me I shouldn’t have to see her this way, I will, because she’s my Grandma and I love her. And I’ll keep visiting so she remembers that.

So at the moment I am just incredibly worn out from keeping family up to date, facilitating visits and visiting myself or being with Dad and Tash during appointments.

On top there is the situation with my own health. I had a call a few days ago from Neurology to say my neurologist ‘doesn’t want to wait any longer to see me’ and I have an appointment on Monday morning. I haven’t even had an appointment through for my CT scans yet, and you’d think the waiting list for those would be significantly less than the ones for neurology. So I’m of course a little apprehensive, maybe even a little scared. I know I need to find out what’s going wrong with my body, and it’s a relief that the healthcare system finally wants that too. But to skip the queue like this makes me worry.

And then there’s Bella. My sweet, sweet girl who seems to be on a steep downwards trajectory. Her tantrums are intense and when she’s not throwing one she is needy or crying. I don’t know if she’s crying in pain or what she’s trying to tell me. The check up and bloods were only a month or less back so I don’t think it’s anything more than a dementia decline. But I am terrified that we’re getting close to her telling me she’s ready. And I am absolutely not ready.

I am too scared to feel any of these things because of really do think they will consume me. I’m scared of where I might find myself, but at the same time the sadness, grief, worry and anger are already consuming me. I’m permanently overwhelmed and feeling absolutely awful at all times. But I still can’t seem to open those doors to start the processing. I guess I’m scared that if I open them I won’t be able to pull myself out again.

So that’s where I’m at. That’s why I’m quiet, that’s why I’m not engaging. It’s one of the realities that regardless of my life coming to a stop 3 years ago, every thing else carries on. The normal circle of life continues and I have to somehow find the strength within me to cope with that as well.

Woe is me.

I’m 6 days post reprogramming now, and day 2 of feeling awful. Until today my head was following a pattern of alternate 8-10/10 days followed by 6-7/10 days. If you’ve been reading my blog for a while you’ll know it’s been some time since I’ve seen pain levels below 8. Shockingly, at 9.30am Sunday morning I was driving to go see Hannah and her family to give Ivor his birthday presents and enjoy some family time. It was wonderful and I was shocked at how well I was doing. Normally, even a good day won’t have me functional before 10.30/11.

But today breaks the pattern, if you can call it that after just 6 days. My head is blazing, my tremors are making basic movements incredibly hard and I’m exhausted. But I made a risky cup of tea and held a zoom social with other members of UKCVFamily. I feel nervous holding these, scared I will say or do the wrong thing. Right up to the moment everyone else arrives and you remember we’re all doing something new here and learning on the fly. Then I relax a little and try to ensure everyone gets space to discuss what they need to.

Admittedly, I do feel a little brighter since the zoom. Perhaps lighter is the better word because I still feel awful, but I feel more relaxed now which naturally makes the tremors a bit less controlling. I’d like to think I could log in and do a bit of coursework, or perhaps finally paint my nails which I haven’t even been able to keep tidy since Christmas, let alone apply polish. But I’ve expended more than my body was capable of today and I know I must go back to a horizontal position and fire up the kindle.

Which, quite frankly, I’m fed up with. I read some really good books and series but I’ve grown quite disinterested in them of late. Which could explain why I’ve not been having such a good time because I’m sick of fucking lying here unable to do anything. So I pick my phone up for distraction – I truly hate phones. Being on it drains me and quite often makes me feel a little low. I’m not doom scrolling or taking in negative content, but still the act of being on my phone is exhausting. It’s the same with tvs and my laptop – screens do me no good which is why I limit them so much. I used to have such a healthy relationship with my phone that allowed me to use it for its essential functions and occupied my time with healthier activities. I no longer have that luxury and so it has seen my screen time increase significantly. Whether it’s playing brain games, sudoku or helping with the group, I’m just eagerly searching for a distraction and hope that I’ll find a quick serotonin boost while I’m there. Though helping with the group really doesn’t come into the ‘unhealthy’ activity category because it doesn’t make me feel like crap, quite the opposite in fact.

So I’m trying to change these bad habits that I’ve allowed to creep in. Though I am unbelievably bored of reading and lying down and not being able to live, I also know that without lying down, actively resting, and reading, that my health suffers. So here’s a little woe is me for you all before I stop procrastinating and actually lie down. The book I’m currently reading is very captivating, but I just wish more than anything that there was something else I could do that can occupy my mind whilst I get the rest my health is demanding.

I also had a couple of old friends reach out to check in with me recently. It’s very difficult when they ask how I am because the truth is that while the implant isn’t providing relief and my other issues are getting worse, I’ve in fact declined since I last spoke to them. I’ve never like to be a doom and gloom person, or someone who moans about everything, but I’m also an honest person. So it makes for an awkward admission on my part and I never quite know what the right thing is to say because nothing makes me more awkward than receiving sympathy. So I guess if you’ve got any tips on the right way to respond then please let me know. I know these people care and I want to show gratitude for them taking the time to think about me and make contact, but I also don’t want to come across as a miserable bitch. My current default is to flip the conversation onto them, but the trouble with doing that all the time is that when I do finally open up to someone, I’ve got so much stored that I’ve needed to get off my chest that I don’t fucking shut up.

So here’s me today, reluctantly lying back down. I promise I won’t go off on another tangent to delay the inevitable. I do really hope everyone reading this is doing well today, I hope you get to do something exciting and I really appreciate you being here listening to a sad girls woes.

I’m Fundraising.

Some don’t believe what thousands have experienced. Some will laugh and mock, others will dodge the topic altogether.

I genuinely don’t care what side of the fence you sit when it comes to vaccines. You’ll probably be surprised to know that I do believe in them, childhood vaccines being one example. However, I also know, without a shadow of doubt, that for thousands the benefit was not worth the risk when it came to the Covid vaccines.

I lost any form of a meaningful existence within hours of this vaccine. It took me years of therapy to reach a point where I’m not angry anymore. I accept the loss of who I was and what I could and did do, and accept who I have to be right now to get through this period. I still fight everyday to get some form of a life back. But in the meantime I now volunteer for UKCVFamily, a charity and support group for those injured or bereaved due to these vaccines. My initial role was as an admin for the support group, but I’m now also their second safeguarding lead. Each day, even when I’m so unwell I can’t get out of bed, I get to help others reach the support they need.

This charity means a great deal to me and so many others. It has genuinely seen my mental health improve significantly, meaning I don’t need such regular therapy sessions. Sessions I’ve had to self fund, despite no longer being able to work. But volunteering now gives me purpose despite my suffering, because let’s face it even the busiest person can dedicate 10 minutes every few hours to helping someone else. So that’s what I do now.

I still hope to be better one day, I mean I’ve been through some WILD treatments because of what happened to me. I have a nerve stimulator implanted in my head and chest, with wires through my neck. I’m part of a clinical study. I’m still having regular reprogramming sessions to try and get this working sufficiently to reduce my pain levels. I also have the most horrendous mullet hidden under my beautiful hair. I’m also awaiting tests for suspected demyelination due to the vaccines, which could be the cause of my widespread pain and disability. It has taken 2 years and 11 months for a doctors to not dismiss these symptoms and the changes in my health and finally look at investigating what has happened to me.

I was competing internationally as a powerlifter, British Benchpress Champion and I designed buildings for a living. The last job I worked on was Google HQ in London, alongside doing all the steel fabrication drawings for the Battersea northern line extension. I’m now disabled and have a snazzy walking stick. I was someone that couldn’t sit still for 5 minutes. I was always doing something and if I was told I couldn’t then that would just make me even more determined.

I’m still determined, in fact more so than ever. But right now, while tests and trials tick away in the background, I focus on what I can do now. That’s helping others, others worse off than me, others who are still angry and only just finding support after 3 years. Helping to change the way adverse reactions are handled by both the government and healthcare professionals. Helping the way the world sees us. We’re no different from the next person, we’ve just had something awful happen that changed the path of our lives.

So I’m raising money for them, money that goes directly to helping us change the world for thousands of people. The trustees and volunteers, like me, receive no money for what we do. It truly all goes to helping our members and our fight for better treatment and understanding. We don’t get to sue the companies that produced these, and the majority of people are having their claims for the Vaccine Damage Payment declined. I know what happened to me and my experience. I also know that in the last 3 years I’ve lost nearly £100k in income as a result. The VDPS is only £120k – that’s less than 4 years income for me, but it is supposed to be enough to make up for the possibility than I may never be able to work again. I’m only 30, I was 27 when this happened. Is £120k enough when my situation may remain the same for another 40-60 years, when I know I will decline throughout that time? But that doesn’t matter, because my claim will also likely be declined.

I hope you’ll consider donating or sharing – it truly would mean a lot. But if not, I hope you’ll consider ensuring to be kind and compassionate if you come across someone else like me. I could have considered fundraising for myself to get the private tests I need to understand what’s wrong with me, but this is bigger than me. Much bigger. It’s called UKCVFamily because we are all in this together.