Month: July 2024

Current situation.

What a week.

Today is a 15/10. So much pain and exhaustion. I’m still getting B12 jabs every other day which alone is using so much energy. My arms are bruised and keep going numb and then painful. I’m also still not feeling a difference from these or the folate and iron supplements. But that aside it’s just been a lot this week.

On Sunday my Uncle passed away and it’s hit us all hard. It was a complex relationship but I loved him dearly and will cherish the many fond memes I hold. Mostly it’s devastating for his 3 daughters who are having to cope with losing a parent when they are all younger than I am and that really breaks my heart.

On top of this I’m having to find the time/energy to do my PIP review. Because if I feel shit about everything else I might as well feel shit about me too. I’m kidding. Kind of. It’s awful and I’m not finished but I’m on a deadline and have to continue to face it.

Yesterday I had reprogramming at Southmead, followed by another B12 jab. These days are especially taxing, but yesterday we really jangled my nerves which is why today is so damn awful. Really fucking awful. But I have another 2 new programmes and will continue to weekly switch between them and hope they work better to bring my pain to a tolerable level.

To top everything off, and I think I’ve mentioned this in my last blog, but my overall health issues are getting worse. The fatigue alone is on another level and the slightest thing is tipping me over the edge. Today I know I’ve got a couple of things I absolutely must do, which means that I won’t be able to make myself lunch or a cup of tea. The things I must do I don’t even have the energy for, so additional tasks are an absolute no no. That’s my current reality. Three cheers for CFS!

But my tachycardia is becoming more of an issue. This is something I’ve had to deal with since the vaccine, and with everything else going on it just became something I monitored and tried to manage myself rather than adding it to the list of things the doctors ignore. My symptoms generally track with a condition calls POTS – this isn’t me self-diagnosing because other things can cause this, it’s just the symptoms I’m experiencing are the same. Basically my HR rises when I’m sat or stood, though significantly higher when stood. Generally lying down helps lower it along with keeping hydrated, calm and in a cool dark room. But I’m finding this isn’t working, on Tuesday despite lying down for over 3 hours I still couldn’t bring my HR below 100. Being tachycardic for 80% of the day or more if fucking exhausting. I really hoped this was worse because of the B12 deficiency, but I’m 7 jabs in and starting to think this might not be the case.

A fellow volunteer for UKCVFamily sent me some music of a specific frequency which brought my HR down from 125 to 90 in just 6 minutes. She works with sound healing and the result was remarkable. I only wish I could listen to it all the time. But I’m glad to have this on hand for those times when I can’t bring my HR to a safer level. I also followed the charity founders advice and ordered some electrolytes which she finds helps on particularly bad days.

It’s not a huge amount of peachy news I’ll admit. But I have to be honest, and ultimately this is my therapy – my dumping zone. My processing space. And that means I have to write what I need to decompress. I have written most this week, but I’m not sharing them as they’re more personal to me. I hope I have some positive progress to write about soon.

But for now I’ll share some of the things on my gratitude list. I’m grateful I managed the drive to Southmead, I’m grateful I’ve not yet had to call for help to get me to my B12 jabs, I’m grateful for my friends and family who are doing all they can to help me cope at the moment, I’m grateful to Bella who is starting to respond to an increase in her meds and I’m grateful to me for persevering and doing everything in my power to better my health and circumstances. And I’m grateful to my sister, who this morning prepped Bellas breakfast and meds, as well as my coffee, before I got up 🤍

I had it bad, but also so good.

On top of my current thoughts and feelings I also have to face my PIP review. I’ve requested my second extension because I just couldn’t bring myself to face it. Yesterday I enlisted a friends help to talk me through it, but now I actually have to do it.

What this means is that I have to review my initial application and tell them if things are the same, worse or better.

I’ve made no secret of how devastating the changes to my life have been over the last 3 years. It took me a year before I even considered filing for PIP or other benefits because I was so adamant that the change would be temporary.

What I didn’t know, that I do now, is just how fucking good I had it at the time of my initial application.

For instance I wrote ‘I can only walk Bella 2-times a week, for 30-40 minutes with a walking stick. But due to the impact this has on me I can’t do this on consecutive days and it means I can’t do other activities like a food shop.’ I’ll be honest I don’t even remember being able to walk so much or so often with Bella. It’s like it’s been erased from my memory, but then I find a lot of things have over the last few years. Another good reason to keep on top of my writing. But ultimately, from what I read, I sacrificed everything else to be able to walk Bella a few times a week, including seeing people and self care. So it may sound like I could do a fair amount, but it meant I could barely do anything else and I wasn’t walking fast, I’d barely manage one field in those 30-40 minutes.

Now I only get to walk Bella maybe once or twice in a 3-4 week period and for a maximum of 20 minutes. With a stick, with rest stops. Often tripping or trying to fight against legs that don’t want to get me back to the house safely. I often find my legs become unresponsive, they don’t ache or hurt, they just don’t listen to signals after a while and so they don’t lift sufficiently to avoid trips or scuffing…which also leads to trips and a feeling of not being safe. People probably don’t understand when they see me why I use a stick if I’m walking anything more than 100m or so, and this is why. It significantly reduces my fall risk, I can walk steadier and therefore more safely too. It also gives me something to lean on when I have to rest.

Of course there are many other examples throughout my application of how ‘good’ I had it when I was already really limited. I just used being able to walk Bella as an easy example to explain, plus being the thing I miss the most and I would trade the world to walk her 2-3 times a week now. I guess that’s down to hindsight, because I just think how grateful I’d be to have those levels of limitations back. And I was significantly limited then, I wouldn’t have received help if I wasn’t. It’s really not as easy as some think it is to get that help.

But compared to now, I had it so good.

So perhaps having my review at this current time isn’t the best for me mentally. Perhaps it’s my review that has triggered the thoughts of comparison, resentment and shame I’ve been having. Perhaps it’s all just a coincidence designed to test me to the limit. I don’t know.

I do know it’s making me feel particularly shitty and I really don’t want to do the review because I dread to think how I’ll feel once I’ve compared then and now in full. But I also know the stress of continuing to avoid it won’t make it any easier. So I’m going to do it, just bear with me while I feel a little sorry for myself and focus on overcoming this trauma.

Envy, shame and loss.

So it turns out my awareness of my thoughts was barely scratching the surface. I’m grieving. I thought I’d done that and reached a place of acceptance but grief is not linear. Who knew?

I am also being quite hard on myself with these thoughts. Particularly when I tell myself that I should be able to do something. There’s a lot of shame around my limitations. I know I often hide my limitations, I will show people that I’m doing ‘ok’ and try to play the role of a healthy human while with them. I try to hide the pain I’m in, the intense recovery that follows me pretending I can do things – the consequences. Because I don’t want others to pity me, when I feel shame and enough pity for myself as it is. I don’t want to ask for help because I don’t want people to know the depth of my struggles, or to appear ’weak’. Especially when I keep telling myself I shouldn’t have to ask for help in the first place, I shouldn’t need it.

But of course I do need it. My reality is that I don’t get washed and dressed everyday because I can’t. I don’t walk Bella daily or even weekly, because I can’t. I get behind on my laundry, because I just can’t do it sometimes. Some days, like one day last week when I was home alone, I had to lie there feeling hungry because I just couldn’t make myself lunch. I couldn’t make myself lunch because I had no energy and I knew I needed to be able to drive myself to the doctors at 4 for my B12 shot. I couldn’t do both. Sometimes I don’t eat a whole meal because I haven’t got the energy too. I sometimes have to sit on the stairs until I can complete the trip up/down. I buy clothes based on how much energy it takes to put them on – low energy clothes and shoes because I can’t waste all my energy getting ready if it means I have none for where I’m going. The walk round the block should take 2 minutes, it takes me at least 10 and a break. I struggle refilling mine and Bellas pill boxes – I get confused, I lose count, my hands cramp, go numb or become really painful and inflamed. One day an item of clothing will fit, the next it won’t. Sometimes I can get my rings on, an hour later they may be stuck. I struggles to lift a full kettle, I have to use two hands. Often my tremors mean using the kettle is a no go, knives too. I have to sit down to chop ingredients when I do try to cook. The standing at the cooker part has to be minimal and will require me using the counter to lean against. I struggle to whisk Yorkshire pudding batter. I can’t lift Bellas dog food delivery anymore. I sometimes get stuck in the bath or my recliner. Sometimes even my bed. Sometimes I’ve needed help dressing or washing my hair. The burning pains in my hands, feet, legs and arms used to only become unbearable in the evenings, now it’s constant and there’s only so much I can do to help it.

What people may see sometimes is me pushing through and doing these things to appear ‘normal’ but not the cost that has. I could have pushed to make myself that lunch and gone to my appointment, but I would have suffered immensely and for days, when I am already suffering immensely. I could have prevented myself being able to drive there or back safely. I could have increased my risk of falling or failing. It’s knowing what I can and can’t cope with doing. I can’t make myself meals daily, 2 or 3 times a day. Not even once a day.

Yesterday I got snappy with my family who wanted to make my bed for me. I’m very particular about my bedding, everything has to be just so. The corner seams must line up, the label on the sheets has to be at the bottom of the bed. There are straps underneath my mattress which attach to my sheets to keep them tight because I can’t cope with loose or creased bedding. My duvet has to line up along the seams, it can’t be loose or wonky. My pillow has to be a certain way round. They wanted to help and I insisted on doing it myself, which is a mammoth task on a good day and I’m not having any of those right now. But they’d done a lot during the day, so surely I should be able to make my own fucking bed when I’d done nothing? I even saved and bought the bed that would make this easier. Now I’m paying the consequences of doing that, plus apologising to them for being a bit spicy. I wasn’t mad at them, I was mad at my own limitations and how much pain it was causing me. But my bedding was perfect and I finally had a good nights sleep, but at what cost?

So yes, I do get envious of others, I do feel bitter. It’s not against them, it’s against myself. Neither is right or wrong, it’s normal to feel that way. It’s how I deal with it, think about it and manage it that currently isn’t right.

So each evening I’m going to say what I’m grateful I managed to do that day. I might post them here, I don’t know. But I need to try and do this to change my thoughts into looking at the positives rather than giving myself a hard time.

Today I’m grateful I didn’t cancel my therapy session and got to attend and sit up for the full hour. I’m also grateful that I have another B12 injection later that could give me a chance at feeling a bit better.

I also reached out to a friend immediately following therapy (following Lee’s advice) and asked for help with my PIP review form. I didn’t want to because I don’t want others to know how much I actually struggle, I didn’t want to face it myself, but I need the help. Both with the form and from receiving the PIP itself.

I know currently I am at my worst physically and that’s likely where a lot of this is coming from. But ultimately I am always going to grieve what I can no longer do, who I no longer am and feel a little jealous of others who do get to perform actions and activities without ever having to think twice about it.

The things I think about too much.

When my health initially changed post vaccine I was so caught up in it that the world and life ceased to exist for me. I mean in the sense that I just couldn’t even think about it, except for in my darkest thoughts. I didn’t notice things like what others were doing and what was happening in the world. I was caught up in everything I was missing out on, things I couldn’t be a part of and this deep grief and loneliness.

But this changed repeatedly throughout the last 3 years. Recently, I’ve found I am very aware of what I can’t do; Things that I should be able to do, things that I was able to do even 2 years ago but not now and things I wish I could do. I’ve noticed this new pattern of comparison that is going on in my mind that I know isn’t good or helpful, though I think my awareness of it does help in it not being too detrimental.

I see what others do, without even thinking, because it’s the sort of action that most don’t need to consider. For example, I was on the phone to my brother and he asked if he’d shown me his DIY chiminea. He hadn’t so, despite being comfortable on the sofa, he immediately got up and wandered into the garden and turned the camera onto the chiminea to show me. Absolutely normal behaviour for a healthy, able bodied person. The chiminea was cool, he’d made it using beer kegs and it’s designed to look like a piglet – with ears and a tail too. But I wasn’t focused on this, it was my sheer shock at him getting up to show me like it was nothing. Because for most people it is.

I don’t know when this switch in my thought pattern happened so I guess it was gradual. Or perhaps I am feeling more aware of my limitations. Perhaps I’m struggling with feelings of envy. I don’t know. What I do know is that I could never. Especially with my current energy levels. If the roles were switched it would be ‘oh well you’ll have to see it next time you’re here’, or ‘I’ll try and remember to take a photo next time I’m in the garden for you.’ But I don’t get to just get up and show someone something in a different part of the house without careful consideration or pre-planning.

No sir, no spontaneous energy expenditure and physical activity here.

I can only assume that I’m not the only physically limited person to have these thoughts, but at times they can be quite consuming. My sister is staying with us currently and it’s been wonderful having her here. She’s also been helping a lot with cleaning and organising throughout the house. Every. Single. Day. It’s mind blowing. She’ll do a day at work, come home via buses and walking, clean the kitchen, do the washing up, stick some laundry on, walk her dog, nip to the shop, feed the dogs, do anything I need help with and have a bath. Some evenings she’ll even cook dinner too.

Mind. Blowing.

It’s wild when most days I can’t do even one of those tasks. I couldn’t do all those tasks in a fucking month and normal people get to do that in a day without thinking about it. Not even in a whole day, they can fit it in after work with time to relax as well!

And I’m led here thinking damn they are amazing and lucky. All that energy, all that useable free time. I have a LOT of free time, but I don’t have much useable time. I sure as shit don’t have the required energy, and what energy I do have I’d have to allocate some to really think about how I could achieve a task. How can I make this task manageable? How can I limit the consequences of this task? How, how, how?

My birthday was on the 4th and I’ve still not managed to respond to every message I received. It’s reaching a point where I fear people will think I’m ungrateful and rude. But I’m not, I’m immensely grateful. I just haven’t got the energy to respond to them all and engage in the multiple conversations I know my response would initiate. I don’t text much for that very reason. I only really text to arrange to meet friends and family face to face every few weeks or so because I haven’t got the capacity to regularly text like most people. I also have my PIP review to complete and it’s become so daunting that I’m putting it off, knowing I’m running out of time. But it’s going to take up so much energy that I currently don’t possess, as well as having a big impact on my mental health.

Anyway, I have therapy shortly so I’ll let you know what we discover on this topic.

Catch up time.

It’s been a while since I wrote…again. I’ve just been too overwhelmed, exhausted and in pain to really do much outside of basic existence recently. So I thought I’d come by with a little update.

Throughout these last few years there hasn’t been a lot I could do to make me feel good, but every few months or so I’d be able to do my nails. That was until last year when they started deforming. Anyway it got to me eventually and I did a little research, where I found it could be the sign of iron deficiency. So a few weeks back I got in with a doc and requested bloods. They decided to check a few things including the iron and when they came back I realised the problem was bigger than I thought. Along with low iron I also had low folic acid and a severe B12 deficiency. So whilst awaiting an appointment I reached out to UKCVFamily members and found that not only was my B12 deficiency severe, it was also dangerous. It could also be the cause or a contributing factor to all the issues I have outside my Hemicrania.

Yup. That nerve issue the lovely doc I saw wanted to investigate could be down to a longstanding B12 deficiency and not one fucking doctor picked up on it over the last few years. It can also be the cause of the tachycardia I’ve been having increasing issues with, pains, numbness, breathlessness, dizziness, tremors etc. The list of what I deal with daily that can be attributed to this deficiency is long so I won’t go through it all.

The other issue is that the NHS rarely follow NICE guidelines when it comes to treating this. In fact I realise I’ve agreed a treatment plan that isn’t in line with the guidelines. But I’ll see how it goes before I create a fuss. I’m mostly disappointed that this wasn’t monitored since I last tested low late 2021, admittedly nowhere near as low, but then that explains why the symptoms just got worse from there. My biggest fear is that the damage done is irreparable, again something I’ll have to wait and see on.

But I had to stop supplements for testing, so I’ve been beyond terrible for a while now and scared that I was having a heart issue. So I successfully advocated for myself and started injections on Tuesday, rather than accepting the doctor’s claim that they couldn’t get me in all week.

So that’s me! I’ve increased Bellas morning gabapentin for the last week and she’s been a lot calmer. She still has bad days, but most days she’s only crying/barking/kicking off when she genuinely needs something. Honestly she’s as stuck in her routines as I am and you can time the tantrums. 10.30-11 = toilet. 1pm = lunchtime snack. 3pm = toilet. 5.15pm (exactly) = dinner time. 5.20= toilet. She’s got a schedule, because it’s always been her schedule, the only change is that dinner time seems to be creeping earlier. But I can work with schedules and justified tantrums, because it’s what it’s always been. I’m just glad for her that she’s not so anxious and distressed that she’s crying outside of these times as much. I think some days she could still do with a little extra, but I’m going to maintain the dose for another week and give her time to adjust and more time to decide what’s best for her.

Grandma is still up and down, currently up. We keep getting called in to say our last goodbyes and then the next day she’s rallied and is holding conversation like she hasn’t been able to for months. Very strange times. But she’s comfortable and that’s the best we can wish for and we’ve been able to get better visits in with her which has been nice for everyone.

I had my hair cut before my birthday, and it’s back to being manageable and not so heavy. Drying time and washing time are both significantly reduced which is a win, but don’t expect to see me tackling it more often just yet. It’s nice to not be getting mad at it so much.

I got the certificates from my safeguarding course which is awesome. It really was very hard given the cognitive decline, so it felt good to be reminded that I really did manage it. Even if I did require LOTS of deadline extensions.

Also, fun fact time. Han and Darc took me for a birthday dinner Monday and we figured out my first tattoo is now old enough to have ID and legally buy alcohol. That feels like a real turning point in life.