Tag: dog

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.

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.

Bella and I.

I feel like I’m holding onto a lot so I’ve come to write and see what comes up.

I had therapy Wednesday which was a great session and much needed. In truth over the last 6 weeks or so I’ve been handling a lot with family and my own health. It’s been a balancing act that I truly failed at and as a result I’ve just been running at constant capacity and still having to keep going. Of course my head had been on fire as a result.

I finally got word that I’m in for reprogramming on April 24th and it couldn’t come soon enough. This programme just hasn’t done a thing and I largely expect I’d have felt the same had the device not been on at all. Except I’ve had a tender head on top where the stimulation is running. So I’m not chuffed and very much looking forward trying again. I wish there was a way I could make sure it’s right this time, I wish I understood it more and understand why when we have got it to work incredibly well it suddenly stops. I wish, I wish, I wish.

Bella had her health check and vaccinations Thursday. This gave me an opportunity to update the vet on changes with Bella and understand these changes a little better. When I understand it makes it a lot easier for me not to get too frustrated and annoyed – which every pet owner does at some point! The best way to describe Bellas behaviour the last month is manic. Crazy tantrums which is yapping, yelling and deep barking at least 10-15 times a day – this is also sometimes accompanied by a heavy paw landing on top of me when I try to ignore her.

I know it sounds awful to say that I do try to ignore her sometimes but the truth is that I always know what she’s asking for. She’s always been very expressive and I know immediately what each tantrum is in aid of. The trouble is that sometimes there isn’t a demand behind the tantrums now – not food, not a blanket, not going out, not attention. It’s just letting off steam, often when she’s feeling anxious or confused. So as soon as I know it’s letting off steam, I let her get it out.

But back to the manic. I explained to the vet this is largely around food and she’s become quite insistent that she’s starving, neglected and never fed. In truth she’s getting more food because of this – but because she gains weight very easily the food she gets extra is carrots, cabbage, broccoli and any other dog friendly veg knocking around. So after more explanation and questions the vet explained to me what’s making her so manic.

Bella is forgetting that she’s eaten, some days mere minutes after finishing her dinner. And because her brain is forgetting it, so is her body – meaning it isn’t telling her she’s full once she’s forgotten. So whilst I haven’t been getting particularly mad at her, because we always have veg for her to eat, I can’t deny that living with Oliver Twist isn’t challenging when she gets quite worked up over it.

Of course the last month I’d say I’ve seen – including what I’ve discussed – quite a dive in her dementia symptoms. She’s been waking me every night, the extra tantrums and food. But she just won’t settle. She’s agitated quite often and the only time she’s calm and relaxed is if I allow her to lie on top of me in the evenings. A 30kg weighted blanket, who flops around like a beached whale with her sharp elbows. But she’s calm. I don’t allow it every evening, but more often than not I give in – it’s something else she’s quite manic over and ignores all versions of ‘no’ she’s ever been taught. I give in, not because it’s comfortable for me, but because if that gives her the few hours of calm she’s craving then that’s ok with me – to hell with the bruised legs.

Over the last 3/4 days she has been a little calmer and she hasn’t woken me up for 4 nights now. However, the decline cannot be ignored, especially with the extra lumps and bumps that keep appearing. She’s been plagued with fat lumps for years, mostly the size of a pea, excluding the golf ball on her chest. So she’s in next Friday to have a starved blood test. They’ll do a full panel and just make sure there’s no other red flags that could have caused this decline along with making sure her body is tolerating all her medications.

So I’m worried. I’m always worried about my soul dog, but now I’m extra worried. In fact I’m terrified because I don’t want anything else to be wrong with my sweet girl, I’m not ready to make any tough decisions. And I’m worried because if something does come up I genuinely have no idea how I’m going to pay for further treatments, tests or medications. Thankfully the vet has agreed to put the bloods through the insurance under the claim for her dementia so I don’t have to pay the excess, but I do have to cover 20% of the cost. So please cross your fingers because my girl doesn’t deserve anything else – she already pops as many pills a day as me!

So that’s where I’m at. I just feel like I have a lot on my shoulders again and the stress does my health no good.

That being said – I’ve accepted an invite to join my brother, his fiancé and their kids at legoland for a day at the start of May. As you can imagine this is going to come with huge consequences, which is why doing a whole day out like that is rare. Most of the time I just don’t consider the risk being worth the reward – it sounds callous but the consequences really will be unbearable. So I’ve also made the decision to hire a mobility scooter for the day. This should hopefully make it more manageable and less exhausting or taxing on my body. My greatest hope is that the kids see me as the cool Auntie with the go kart.

I’m sure I’ll come with more updates or happier news at some point, but for now I’ll end with the positives that have come from these heavy situations. Because while it’s been heavy, both my therapist and I agree that I am and have coped remarkably well. And then I burst into tears while saying ‘I really am coping’. Happy tears, tears of shock, because this time last year I really wasn’t coping and wouldn’t have coped with everything that’s been going on. But I am. I have my therapy where I deload, but it’s just that; deloading. I don’t need to process, seek advice and extra support or have a safe place to admit that I’m drowning – because I’m not. My health is making it hard, these things all take their toll. That’s the part that’s the problem, that’s the part that I’m perhaps not always coping with. But mentally and emotionally I am coping and I am ok. I have dark thoughts quite often – they come to visit like an old friend. But they don’t bother me now, we greet each other briefly and continue on in separate directions. They never stay and I don’t fear them now. Because I know I’m ok. When my head is a 10/10 and I fleetingly wish that I could just end it, I remember that it’ll soon be tomorrow and tomorrow will be different. Or in a few hours it’ll be time to take my evening meds and then it’ll be bedtime before I know it – and I know I can cope a few more hours until then.

So while everything is a lot I am ok and that’s a wonderful thing to be able to say.