July 2026 – Letters From My Bed

Not quote worthy of my wrinkles.

I had an interesting dream last night, I was a little older than I am now and able to walk a little further.

Apparently, I was able to walk enough to find myself with 3 other dogs, gifted by friends. I had a Black and Tan dachshund, an English pointer (seriously, Riley is enough, don’t anyone ever gift me a pointer), and a harlequin Great Dane (a dog I one day hope to get the chance to own).

They were all young, and I was in a small clearing in a woodland area working individually with them on their basic commands and loose lead walking. A little amusing really, as Riley still insists on very tight lead walking.

I’ve always dreamed of being around lots of dogs. About a year or two into getting sick I even researched the idea of becoming a dog trainer, with a hope to one day have my own property to run a doggy day care. But currently, I’m researching into becoming a therapist. With the only hurdle really being how to fund 3-5 years of part time education and how to achieve it when I couldn’t even manage weekly choir at the start of the year.

But it’s interesting to me that my dream was with me older, and being able to walk a bit further. Most interesting, is that today I received an email to say my “rehabilitation referral” has finally been sent. This feels quite monumental given the fighting I’ve had to do for over 5 years to finally get someone to recognise that I do in fact need help to rehabilitate or make my conditions more manageable.

I’m trying to not get hooked on the word rehabilitation, largely because it was made clear that recovery was unlikely. I’ve certainly had enough disappointments over this time to get caught up in my dreams of being healthy again.

I’ve also been thinking a lot about aging. I’ve developed skin care pigmentation changes around my eyes, the skin around them having less elasticity and forming soft wrinkles, and finding the occasional grey hair.

Frankly, I think it’s criminal that I’m aging at all. My life has been on hold since June 2021 and I don’t thinking I’m asking a lot for the aging process to also be put on hold when I don’t feel I’ve truly lived my life yet.

I always thought when signs of aging started, I’d embrace it with open arms, knowing it was a sign of how much life I’ve lived and how many experiences I’ve had. I’d have welcomed the wrinkles with open arms, knowing I’d worked hard to earn them. Thinking, somehow, that each grey hair held a story, an experience and a memory.

I’m embracing it, but begrudgingly. And with the hope that when the signs become more obvious, that I’ll have some big and wonderful experiences under my belt to help make me feel worthy of the wrinkles, greying hair and softer skin.

The house always wins, but humour remains intact.

The consequences of my birthday actions finally caught up to me yesterday, and today.

It didn’t help that my memory failed me yesterday morning, so as I led in bed after breakfast, my Hemicrania and occipital neuralgia were ramping up for a fight. When it finally reached a solid 25/10 and my droopy face had returned, I wondered, “did I actually take my pregabalin?”

I couldn’t remember, absolutely no recall. I eventually made my way downstairs to where I keep my meds to see if it would trigger a memory. It didn’t work. I weighted up my options, and decided I was in sufficient levels of pain that I’d rather take it and end up high from double dosing, than to leave the pain getting any worse.

I didn’t get high so I guess I had forgotten, but taking it late doesn’t really have the same effect and all it did was take the edge off. Juggling chronic illness, meds, supplements, life, energy and everything else is hard work, but it’s even harder when you rarely have the capacity to create memories anymore.

It’s something I learned a lot about in the FND education course. I now understand why it’s hard to make memories or recall information (which I’ll write on soon as it’s quite interesting!) , but most days there’s little I can do about that. So we roll with it, and hope I don’t forget something major like forgetting to take my meds.

It does make me wonder sometimes why I’m pushing through withdrawals to try and come off the pregabalin. I knew I was signing up for higher pain levels, and hopefully with the really slow reductions the pain won’t be like yesterday. But it’s still quite scary to step into the unknown. However, I know the drug is horrible and I know in other areas it’s not helping and worse, contributing to some issues. It’s got to go.

It’s a bit like choosing whether to do something without my walking stick or chair. It’s a gamble, and I don’t know for certain how something’s going to go. Sometimes if I go to eat out, park right outside and don’t have far to walk, I might risk no stick. Often I find this was the wrong decision, but we know how I feel about being seen with aids or being seen as disabled.

It’s a bit daft really, because without the stick I become more disabled very quickly and it’s visually far more noticeable than if I’d just used my stick. In fact, I look like a bit of a one man rave, but I still make this mistake.

I thought having a stick that didn’t remind me of old people would help, and I suppose it does to an extent. It’s nothing exciting, I certainly can’t afford a stunning stick from Neo Walk. It’s simply black and silver with a comfortable ergonomic handle, a dress up or dress down stick. But to do things without it is a gamble, and the house (FND) always wins.

I’ve lost my train of thought now, but I know we started with the consequences of my actions. Ultimately, everything comes with a catch and I have to weigh up if that catch fits in my diary, or whether I’m mentally strong enough to handle it, or how bad it’s likely to be. Like weighing up the risks of coming off the pregabalin and deciding I have to try.

I did well for it to not hit me until Tuesday I think, I’m going to take that as another win. But I really do hurt. And the heat doesn’t help with inflammation and recovery. But I kept the week clear because I’d already decided that I’d take whatever price my body would demand I pay.

I’ve still managed to do things, which in itself is another achievement. While bed and chair rotting, I’ve been looking into what I might like to do with my life. The universe has been sending me signs, and I think I’m at a point where I need to start listening. Not that I can work right now or move into my dream bungalow tomorrow, but I can plan and take steps towards those dreams and that’s what I’ve been looking into.

It’s quite exciting actually. The one thought I keep coming back to, and I know I’ve mentioned it before, is that not many people get a chance at a do-over in life. A complete fresh start feels like a gift, even if it’s not one my body or health are ready for me to make use of yet. But I don’t want to waste it – I’m fairly certain I won’t like what the universe throws at me next if I was to get it wrong again.

So that’s me and how I’m coping with my jail time this week. Lots of electrolytes, water, rest, naps, snacks and research. It’s very rock and roll, and also very intriguing that I’m not as miserable as the pain is making my face look – which looks like half of it was painted by Salvador Dali.

Enjoy that amusing thought, it’s long past my bedtime!

I hope I don’t jinx it.

I’m aware that the majority of my readers also suffer with chronic illness, so I wanted to share a little about how I got to pull off this weekend. I’m not better, in fact my energy levels haven’t recovered fully from the dive they took over winter. I still rest just as much, if not more, than I did last year. But last year I’d have never pulled this off so smoothly.

Last year I did the same family bbq, and I crashed hard and spent weeks recovering, despite cutting the day short.

I fight with my body less, I sit more, set time limits on activities and try not to feel guilty about not doing as much as mum around the house. I’m strict with my diary, and book it out like I used to when I was working.

7am – feed and pot Riley, breakfast, meds

7-11am – bed rest

11-12pm – exercise Riley

12-1 – rest and a small lunch

1-2pm – rest

2-3pm – 30m playtime with Riley, rest

3-4pm – activity (bath, hoovering, washing, write, research, charity work)

4-5pm – chat with mum and rest

5-6pm – rest

6-7pm – feed Riley, feed me, meds

7-9pm – rest, watch tv or read

9pm – pot Riley, journal, bedtime

This occasionally changes when seeing friends, I’ll get up at 10 to exercise Riley, meet at 11, home around 1-1.30pm and then rest for the afternoon instead of another activity. That’s a standard day for me, but often the afternoon activity will be something I can do sat down.

Being really structured with my day, and intentional around where I spend my energy, I reduce crashes and the severity of them. This means when I do things, I can give them a little more time, energy, cognitive function, purely because I’ve not wasted it elsewhere.

The other change is supplements and nutrition. Now I’m gonna be honest, I’m not shoving kale up my arsehole and snorting protein powder. Low energy, remember? So it’s got to be manageable and manageable for me means convenience.

I start the day with hot water, freshly squeezed lemon juice and a gut healing honey from Just Bee. This is paired with a Belvita breakfast bar and my meds. The supplements I take at this time are a strong multivitamin, I use Oxford Vitality and tolerate this well. I also take 1-2 CoQ10 from British Supplements. Two on days I need to be up and active a little earlier.

Lunchtime I take the second CoQ10 if I didn’t take it at breakfast. Dinner time is just meds. BORING.

At bedtime I take 1 magnesium and 200mg L-Theanine. If I’m going through the withdrawals impacting my sleep, both of those get doubled, if that doesn’t work then I add in melatonin temporarily.

Now the only thing that’s changed to see the improvement in recovery time, is the CoQ10 and honey/lemon/hot water in the mornings. I’d already implemented the strict routine and energy planning, but since adding these my recovery is a lot smoother and I go into less prolonged crashes. I added them at the same time, but I believe it’s the CoQ10 making the difference. It’s also helped me be able to go a little longer when doing activities like this weekend, which is a double win!

The lemon and honey have been great additions though, simply because I have a lot of irregularity and gut issues and pain. These are a lot more controlled now, including the reflux that’s been plaguing me since I was first introduced to Indomethacin in 2015/2016 and it damaged the lining of my stomach. No one warned me to take it with a substantial meal and a stomach protector. Then of course I wasn’t warned about the dangers of long term PPI use so I could keep taking Indomethacin to control the Hemicrania.

Fun fact, my neighbour has major gut and reflux issues and I recommended the honey/lemon/hot water combo to her. She reported last week how beneficial it’s been for her, as did a lady from mums work who we recommended it to also.

I also use my chair more frequently when I go out. Last year when I had it, I’d still try and push through to get round a small shop or if I was just picking up a few bits. Now I don’t fight it, because my legs are worse and I’m conscious of not pushing my body beyond its limits simply because “I used to be able to do this” or worse, thinking I should be able to do something. The self-gaslighting as a disabled person is a fucker.

If I’m just popping to the 7-11 down the road for one or two things, I use my stick, but anything more and the chair gets used. This means less energy spent, less pain, less fall-risks while out or even after at home because I’ve used my legs beyond their “safe” limit. It also means I might be able to pick up a few bits mid morning and make something simple like fajitas or salad for dinner. Two activities in the same day would be a hard no if I’d fought with my legs around the shop.

I want to add that none of this is advice, recommendations or toxic positivity. It’s just what’s working for me right now, and in 6 months it might be something completely different. But it’s important for myself to document what has been beneficial to add/change and in what way.

The routine part for me is easy, I’ve always been keen on a routine and nothing changing which can sometimes make chronic illnesss and it’s unpredictably very challenging for me. I don’t want to have meltdowns and throw toys out the pram, but sometimes that’s where it leads and I just gotta roll with that too.

Yesterday, I managed to pop out for lunch with mum to thank her for her help this weekend (I didn’t have food prep and dishes energy!). I also got to make a little joke as we passed JD Sports; I announced I needed to go in on our way back, when asked what for I told mum I wanted to treat myself to some new running shoes for my birthday. Luckily she’s my mum so she has to laugh at my dodgy humour! Instead I’ll be buying myself my annual orthopaedic pillow replacement and my increasing neck pain is telling me that the current one has reached the end of its usefulness.

None of this is to say that I find these things easy, these days and activities are still really hard for me. I’m still anxious about being seen in my chair, or using my stick – especially when I trip over it or my legs are so bad my arms start joining in. This is a new thing, usually it’s just my legs doing their own thing, but the arms are starting to do similar if they don’t have a job. I took Riley to a secure paddock the other day, and my legs and arms were going wild.

I’m a work in progress, I probably always will be, but I think recording what’s currently helping me is good because I actively avoid tracking my symptoms but tracking progress feels manageable.

A weekend to remember!

What a weekend I’ve had! Yesterday was my birthday, and for anyone curious to know, I did in fact turn 21 and no I won’t show you my ID for proof. She’s on holiday.

I’m absolutely exhausted but my cup is overflowing with the love and joy I felt showered in this weekend.

Having chronic illnesses and being disabled means things have to be planned a bit, prepared in advanced and then cling on tightly to the hope that my body won’t throw on the check engine light. Somehow, I pulled off celebrating my birthday across two days with all my loved ones and for once, I’m actually thanking my body for giving me this gift.

Friday night I met with the girls at one of my favourite pub/restaurants from before. The Three Daggers in Edington is a short drive from where Han and I used to live, and I love any opportunity to go back. Han, Laura, Darcy, Kalie and I all met to have some wood-fired pizza, some drinks and a lovely relaxed evening. I even pushed the boat out and had a few gin and elderflower cocktails!

The food was to die for, but the company was what really sold the night. I honestly don’t think I could ever spend too much time with my friends, but to have them all together is a real treat and something I’m incredibly grateful for. We chatted freely about anything and everything, even discussing the proposed in-patient pain clinic I’ve been referred for, and why I try so hard to mask my symptoms when they come up. I can tell these girls anything, and I’m a truly lucky lady to have such incredible support and love. Of course we spoke about plenty else, the highs and lows of raising children, work, family. Everything was on the table and it just felt so good to share the night with them all!

Saturday, my birthday, we had a family bbq planned with my parents, sister and her boyfriend, Marek. Of course I LOVE BBQ food, and I also love being Chief of Fire and Tongs (yes, that is my official title). But to manage it takes a lot of pacing, and a lot of help from Mum too.

We spent the morning, after my usual rest period to get over how yucky I feel in the mornings, slowly working through tasks to make the day ahead relaxed and manageable. I’d do a small task and rest, and repeat until the house was presentable, garden set up, food as prepped as we could get it, and drinks cooling in the fridge.

I’d don’t really do portions when it comes to BBQ food because I want it all, so we had burgers, kebabs, corn, sausages, salad, coleslaw, potato salad. The whole works.

My family arrived and I had some more lovely gifts added to wonderful gifts the girls got me. We got drinks and went and relaxed in the garden for a while, just chatting until I was rested enough to kick the bbq into top gear. Food was cooked, eaten and we settled in to let our food go down with some cards against humanity. For which I probably owe the neighbours an apology, their kids probably had an intense education.

But before we settled down, as I went to go upstairs, I realised there were some visitors at the door. It’s been two weeks since the doorbell told me the batteries were dying and I still haven’t remembered to change them!

Han, Jordon, Ivor and Arlie were on the doorstep with a cake, candles, flowers. They sang me happy birthday, I blew out the candles (that the wind already blew out) and got the best cuddles from Ivor and Arlie! Honestly this was just the icing on the cake for my weekend, and the cake itself was magnificent! It felt like my own little Love Actually scene – “it’s Carol singers!” That they’d take the time to come by with a little song and lots of cuddles just reminded how incredibly lucky I am to have the people I do in my life, and how truly loved I am. Even more so when Ivor sneaks up for a cuddle!

Riley kept popping his head round the door to show everyone his ball, proud little man that he is, and thankfully had been on his best behaviour all day. He decided that he wouldn’t use them as bowling pins to my relief, and saved that for my dad and Marek.

I ended the day with a video call with my brother, his fiancé, Ben and Pat, and my niece and nephew, Fifi and Oscar. That rounded the day off and I couldn’t have asked for a more perfect weekend to see and speak to everyone I love so dearly.

Not to mention all the messages that I’ll have to find the energy to respond to today. So many reached out, shared memes, photos and lovely messages.

This weekend really was a big ol’ middle finger to chronic illness. To have had so much love and fun in two days is unheard of for me, and I really mean it when I say my cup is overflowing with all that love and will keep me going for a long time.

I’m a lucky lady to have so many people who care about me, support me and who helped make this weekend achievable for me. I was pushing my luck trying to do everything on consecutive days, but it paid off.

Riley was on his best behaviour all weekend, no mishaps with the bbq or knocking people over with his enthusiastic welcomes. Just a happy boy , surrounded by people willing to throw his ball and a burger of his own to join in with celebrations.

I hope you enjoyed reading this as much as I did writing it. Sometimes the stars align and let me do bigger things like this weekend. It doesn’t always work that way, and I couldn’t have done it without everyone’s support and help, but we did do it and I’m a very happy, grateful, tired lady!

Ps. This weekend ticked off more things from my “Things I want to do in 2026” list. A list generated around no longer waiting to be well to live life. We’re halfway and I’ve made cracking progress!!