walking – Page 5 – Letters From My Bed

My darling and I.

I got to take Bella for another walk today – bloody unheard of seeing as it was just Monday we got lost.

We didn’t go far, across the road to the fields for 20 minutes or so, enough for us today. But on this walk something wonderful happened.

About halfway I stopped to let Bella catch up, once every blade of grass between us had been inspected, shredded or pee’d on. In this pause, marvelling at my dog like I always do, I became aware of a strange feeling within me; Peace and no pain. Yes, you read that right. I too was in disbelief that I stood and did a full body scan, and nope, I couldn’t identify any pain. My head was clear and I got to take a deep breath that felt like it was the first time I could breathe in a long time.

Inevitably, it lasted just a few short minutes but it was wonderful. Usually walking increases my pain, but today something was different.

Friday I started my 4-week low histamine diet. Friday and Saturday were rough days with pain, nothing unusual there, but my watch was certain I’d woken Saturday with a higher body battery than usual – 51%!! I’m not sure where it was stored as I couldn’t feel it or access it, but I’ve seen the watch is quite accurate and helps me prevent crashes by running out of battery.

However, today I woke up with 82% which is a number I haven’t seen since the start of all this. Better yet, I felt it. I didn’t feel so heavy, lower pain levels and a clearer mind. It could just be one of those lucky days, but I’m wondering if perhaps it’s eliminating histamine and therefore reactions.

Time will be the decider on that, but what if my health has been so dismal because I have been having reactions for the last 3.5 years? I’m getting ahead of myself a little, I know, but I have to hold onto hope that something, at some point, will help me in my quest to heal.

And my darling thoroughly enjoyed her walk with me today. The increase in meds is starting to help too, I’m seeing promising changes finally. She’s become more cuddly. For a long time now she’s refused to keep me company when I’m stuck in bed, and only occasionally requested to be a lap dog in the evenings. But nearly every day, for the last 5 days, she’s keen to be the velcro dog I’ve always know. It’s been wonderful, and incredibly good for my soul. That she wants to seek and give comfort again is nothing short of a miracle.

The barking all day has also reduced, though when she gets started she’s insistent. But those times are nearly always for something like cheese on her breakfast, lunchtime snacks, toilet breaks or dinner. Not forgetting second dinner of course, she certainly won’t let me!

I really think my Bella is starting to become content again, and on just 200mg at lunch times, which can be increased up to 500mg. Again, I don’t want to get ahead of myself, but I really believe this could be buying us more time together. That and the fact I’ve managed to walked her 3 times in as many weeks really feels like a sign of progress for us both.

I’m glad I get to come here and share that hope and joy with you, I know my updates aren’t always sunshine and roses. But maybe, just maybe, my hope has not been misplaced this time 🤍

Have a pew.

As part of my fundraiser I requested help to invest in a perching stool in the hopes it could help make kitchen tasks more manageable.

A lady I used to work with, Kat, kindly offered me a stool her husband had stored in the depths of one of their cupboards, she even dropped it off a little while back. I was and am incredibly grateful for this, not just the stool. She spent a little time here with her two children while Bella showed them how loud she could bark.

I finally got round to setting the stool up last week, or perhaps the week before – it all blurs into one. Today I got to use it for the first time!

I’ve had quite a low day, as my earlier post states. I did get Bella out for a walk, and to make it a little special I drove us to the woods we used to walk every morning on the way to work. There’s a part that’s always quiet, where the entire floor is moss and spongy. It’s our favourite bit, Bella loves to dig it up (please don’t hate me!) and I just love the quiet and seeing her happy. But it turns out even forests change over 3.5 years and I got lost. The paths we once walked were blocked with fallen trees and in trying to find the way we somehow got a little turned around. My sense of direction is not what it once was.

Neither of us can sensibly walk very far, my legs don’t receive communication very well after a while and get very heavy, along with a constant yawn to tell me by body needs more oxygen. Bellas back legs have started going a similar way, she slips and stumbles more now, especially up the stairs. But as I say, we got lost and were walking (stumbling) for around an hour to get back to the car.

By the time I managed to drive us home we were both beyond pooped (mum had to undo my boots for me as I couldn’t get to them), so off to bed we went for a little lie down together. She actually joins me more for this since increasing her meds and I couldn’t be happier about it! But along came dinner time, and it was just a simple salad and I really wanted to do it. The trouble was, I could barely stand to be on my legs, they were not keen on supporting me after what I put them through – who can blame them!

An opportunity arose to finally take the stool for a spin. What an absolute delight it was! Once I got everything out of the fridge and ensured I had all required tools and bowls (I do this anyway because I’m anal like that) I sat down and next thing I know dinner is finished. I make it sound like a doddle but the exhaustion made chopping safely more laborious because I just didn’t have the required ‘oomph’ and exhaustion increases tremors. What is impressive though is that by using the stool this task WAS manageable and only using 3% body battery.

I could have used it before today but I’ll admit that I’ve put it off, despite taking the plunge to get one in the first place because I DO need aids to help me. I don’t think I’ll be so reluctant going forward, who knows maybe one day soon I’ll even make risotto again because I’ll be able to stir for the required 45 fucking minutes. I mean I’m clearly so blown away by how much this stool helped that I’ve written a whole journal about it, aren’t you lucky!

When the supporter becomes the supported.

There is a wonderful gift that has come from my being ill. In fact, there’s many, but one in particular that I’m exceptionally grateful for. This is the gift of meaningful communication, deeper relationships and being truly heard.

Perhaps that might sound normal to some, but it might surprise you to know that for me it is not.

Prior to the vaccines, while on the whole I had wonderful relationships with friends and family, I didn’t allow people in. I didn’t let them see the dark and the heavy, I never told anyone how I truly felt or if I didn’t like something, or that they’d upset me. I guess I was conditioned in a ‘chin up’ and ‘people-pleaser’ kind of way. That a problem shared is a terrible thing indeed because then I would feel like a burden or that I’m putting someone else out. And asking for help was certainly out of the question.

But of course I started therapy in 2020 and slowly we worked on breaking this conditioning down. How on earth could I get through the highs and lows in life if I didn’t allow others to support and love me, or at least truly see me. I’m still working on this, it still feels very uncomfortable to be honest.

The hardest thing to be honest about is how I’m doing when someone asks are ‘you ok?’ I hate answering this because I’m tired of not being able to say ‘actually I am ok’ and mean it. But of course I regularly say that I am ok, even when I’m not, because I’d hate to burden another. Or the reality that it’s the same issues I’d be bringing up. Not a lot has changed, I’m in a lot of pain, most food is dangerous, I don’t know the last time I felt even the smallest spark of energy and I’m grieving for Bella all the time.

But my sister called me today, and today I am decidedly not ok. I’m very low, my garmin watch is certain I woke with 76% body battery but somehow I’ve already used 20% doing nothing while waiting for my medication to kick in. But I’m still not sure where the energy is being stored or how to access it, because I’m bone tired and my head is full of a lot of pressure.

So when she asked how I was I decided to be honest. I have a list of things I’ve been needing to do for a while, especially changing my bedding. However, today I’m really struggling with grief for Bella, though she happens to be led right next to me. So I want to try and walk her today. But I also really need to wash my bedding, wash my hair, hoover my room, tidy my wardrobe so my clothes fit in rather than them sitting on the floor that’s covered with dog fur because I haven’t hoovered in over 3 bloody weeks. I also STILL need to send my food diary and information to the dietitian to start working on a low histamine diet with her so food can become less toxic to my body and health. It’s been nearly 3 weeks and I just haven’t had the energy to be able to write it up and send it across.

Of course there are other things worrying me besides my health and my own woes. A few family health scares have come up and that’s quite concerning while we wait on tests to decide if they are scares to be scared of or not.

But since being ill and working on therapy to break my conditioning my relationships with friends and family are much deeper, because I allow them in. It’s hard, and sometimes I still lie and say I’m ok, but I really do try to be more open and honest and in return they are much more meaningful relationships.

Today, Tash (my sister) allowed me the space to talk and be monotone and cry and little. Then she decided today, whilst deep in my grief, I would rest for another hour and then take Bella for a walk, before coming home and having a small lunch before resting again. She’d help me in the week to tackle my bedding and room and she’s going through what I’ve got for the dietitian to ensure I’ve covered everything well enough before sending. Along with reminding me of my usual advice, I can’t waste energy worrying about things out of my control because it doesn’t change them. She listened, she heard me and she helped put a little order to the jumble of tasks and emotions I’m dealing with.

Today that was exactly what I needed, and had I not allowed myself to be honest with her then I wouldn’t have got it. She can’t help if I don’t allow her to, no one can.

That’s the ‘gift’ that I’ve gained through this situation. As I said, I’m still working on being honest with people to allow them to support and love me. It also encourages them to do the same in return because I’m one of those people where I want the good, the bad and the ugly. I don’t want people to filter themselves around me or feel that they can’t come to me for love and support. It’s funny how I struggle to give them that in return, but surely practice makes perfect? Or perhaps with practice this will eventually become easier and more natural.

That’s enough from me today though, I’ve got a field that’s calling mine and Bellas name!

Updates and results.

So I’ll start off with the great news, my pillow arrived and I slept wonderfully last night. I woke up with significantly reduced neck pain – so thank you to everyone who’s donated to help me.

The fundraiser has been a rollercoaster, especially emotionally. I just didn’t think it would take off like it had, and I was honestly just excited to raise enough to see the private doctor. To have raised £1275 is just phenomenal, and I’ve cried a heck of a lot. I’m putting it to one side so I have it there should I need any tests or treatments following the appointment, or if Bella needs anything urgent too.

I saw a doctor on Tuesday to discuss my recent change in health. I’m in for more bloods today to check for coeliac disease and IgE levels. She’s also referring me to a dietitian as chicken salad isn’t sustainable, though it’s hardly my fault my body rejects everything else. We did a simple yaki soba last night, hoping that fresh veg etc would be ok. Wrong!

Naturally during this appointment I explained that I just ‘can’t cope living like this and being afraid to eat’. So I was hit with the ‘we do need to consider these reactions being a physical manifestation of your mental health, you could be having panic attacks.’ So I’ve tasked the doctor with finding at least one person in Britain who has panic attacks at the idea of roast dinners and Chinese takeaways. I don’t hold out a lot of hope for her, but I’ll remain open minded. I did kindly point out that the symptoms started before my mental health dipped, not the other way around.

My private bloods came back last night and while they’re mostly ok, there are some concerns. Most of the lipid results, regarding cholesterol, are high and do need addressing. This obviously isn’t good news for my heart health. Of course the doctor that reviewed these doesn’t know my situation, so he’s recommended a healthy lifestyle and diet, including strength training. Which we all know I’d have never willingly given up. My testosterone is also low which is significant for women and impacts mood, energy etc. Again I’ve been prescribed strength training. And my liver is showing signs of stress.

I’ve sent these results to my doctors surgery to review alongside last weeks bloods and the ones being done today. I will of course keep you posted on this.

I’m booked to see Dr Claire Taylor on December 30th, but I will be checking daily for a cancellation that could get me in sooner. I still believe she is the best chance I have at getting real answers and real help. The doctor on Tuesday willingly admitted that western medicine and the NHS have quite a narrow and close minded viewpoint and they can only do what they’re allowed to do. It was refreshing to hear!

So there we are, you’re all up to date and this information is now no longer taking up storage space in my brain. I ensured I had a completely clear week, last week I did too much and I knew I needed to try and take things slower. So on Monday Tash dropped by and we took both dogs to walk around the block. Quite often I struggle with this, and Monday was no different. But I decided to do the last stretch along with edge of the fields so Bella could have a bit of a run. If you could have seen just how happy she was to be out with her mum you’d have cried with me. With her big smile, she didn’t run, she bounded and frolicked. It will unfortunately be her last off lead run outside of enclosed fields, but she had a wonderful time and so did I.

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.