dog – Letters From My Bed

Out of reach, so far.

I haven’t been writing much lately, I guess I’ve kind of been in my own bubble. With my pain and fatigue worse I’m having to do less, and when I do activities they bring on intense symptoms or result in longer recovery. All in all, there’s not been a lot to write about!

I’ve been quite frustrated by this the last few weeks. I felt I’d been doing quite well, and I guess in a way I still am. I’m maintaining control over my mental stability and I’m not pushing through pain and fatigue and sending myself into full flares. This is probably quite significant given my baseline has dropped, and I am genuinely happy that I’m listening to my body.

But it’s made my world quite small and isolated again. I can only manage one social interaction every 2-3 weeks, and with a shorter duration. Even so, these are taking several days to recover from which is particularly unusual.

Despite this, I’ve found I quite enjoy doing diamond art. And I can manage a few short sessions of this most days, providing I haven’t done anything else that day or the day before. And it doesn’t matter that my tremors make me put the gem in the wrong spot, I just shove that little sucker across to where it was supposed to land. It’s quite soothing and has the added bonus of being good physiotherapy for my hands.

I’ve also had a long assessment for a residential pain clinic, that’s been a few sessions spread across the last threeweeks. Initially, after the first assessment, I was feeling really positive. I had a 5 page write up the following day, and they actually listened. I really thought I was on to a good thing, they said they’re often treating people with FND, POTS, CFS/ME, chronic pain and hypermobility.

They think I have neuro inflammation, along with chronic primary pain, and believe there is a link between this and my immune system. I can’t argue with them, I think they’re probably right.

But it feels like that good opportunity has come crashing down around me. They think I’d be a good candidate for the program, which is four weeks residential, but then in the final assessment they explained what the program would look like. Each day would consist of two strength and fitness sessions, a psychology session, an occupational therapy session and a health and wellbeing session. Each session being an hour long, and spaced between 9am – 4pm. 5 days a week, for four weeks.

That’s about the point my hope crashed down, because right now I couldn’t manage one of those days if it was spaced across a whole month.

On Wednesday, I took Riley to a private field; I was sat down, he was running around like an idiot with a rocket up his ass. After, thinking I felt ok, I went to the pharmacy which was only a five minute drive. I parked right outside, took my stick, and then my symptoms kicked off. All the symptoms I’ve not been dealing with because I’ve been deliberately keeping life small so as not to trigger them.

I walked in shaking like a fucking rampant rabbit, while my head and arms were twitching like someone was pulling invisible puppet strings. I got what I needed and, knowing I wouldn’t be well enough to finish my errands the next day, I went to the pet shop to replenish Riley’s treat jar. By this point, I looked like a clapped out generator that should have been decommissioned a decade ago.

I got back in the car and realised I couldn’t safely drive home because I was shaking so violently I couldn’t hold my foot steady on the pedal. But,

I knew in the moment I had to distract myself from the symptoms while taking a little rest so I could make the drive home. I drove, not very smoothly, to the other side of the car park and into the McDonalds drive thru to grab something to eat – the distraction.

After 10 minutes of slow munching, I was finally able to drive home without my car kangaroo hopping down the road.

I’ve been fucked since. There was a minor stressor yesterday, Thursday, which immediately brought on another tremor attack as my nervous system is still so upset.

But somehow, others believe I can go from this into a one month program where each day is full time mental and physical activity and stress. If I could manage that, I’d be fucking working. I can’t even sit on my arse in a field for an hour and pick up medications.

I guess I really got my hopes up, after five and a half years I was finally being offered help. I was even willing to accept a month without my usual routines, Riley and home comforts. They knew that I can’t wash and dress daily, that often I need support with bathing and that I’m not considered “independent” with my medication because I have to rely on alarms to take medication and help filling my pill boxes when they need filling on a day my hands are being difficult.

I really struggle with a lot, and it’s taken me 5 years to reach this point of activity level. And it’s been 8-9 months of that activity level getting lower and lower again. Yet their answer to my concerns was that I’d have six months to build up to being physically and mentally active for seven hours a day, every day consistently, washing and dressing daily too, before the residency. I’ve spent 63 months trying to achieve that and my assessment for the chronic fatigue clinic I’ve finally had sent won’t be for 26-28 months. 2-3 years!

This probably came at a bad time where I’ve been feeling a little fed up of barely seeing my friends and family. The help I finally thought I’d be receiving is more likely to make me bed-bound again if I accepted it in my current position. It’s a bit of a blow and brings up previous frustrations I’ve worked hard in therapy to process. The loss of a normal life, the ability to work, the ability to exercise daily, the ability to compete at weekends to earn more medals and titles. The ability to walk normal and for more than a few hundred metres. What I’d give to actually walk Riley, and to have been able to confuse my hikes with Bella while she was still with me. There’s so much loss that’s been brought up because the “help” I’ve been offered, and assured is possible, completely invalidates my very real restrictions.

To cut a long story short, I don’t think now is the right time for me to accept that help. However, I’ve sent an email to my FND neurologist for their input. Given I’m waiting for neuro-physio and the CFS clinic referrals still, I can’t ask them for their professional opinions. Hopefully I should have something back next week so I can give the pain service a definite answer on whether to postpone my referral or not.

Otherwise, not much has been happening. I’ve been exploring the idea of making wreaths as a way to generate some kind of income to help pay for the supplements I rely on to keep me from being bed-bound, my pain keeping my up all night and having major MCAS reactions. Currently I’m relying on help to pay for these, which I really hate doing. It’s bad enough not being able to work, not being able to be self-sufficient too to manage my health is just another kick in the teeth. So, if anyone has wreath making experience, I’d love to learn! But I’ve also got a YouTube library of tutorials to work through once I’ve saved the money to buy materials.

Despite all of this, I’m still proud of where I am. I’m a strong woman who continues to refuse to give up, who continues to hope and dream of ways to find improvements in my health, how to generate an income and who simply continues to climb any obstacle in my path.

The pain residency may not be right for me now, but when I think I can cope with it I will do it and go into it like I fucking mean it.

Out of reach, so far.

They think I have neuro inflammation, along with chronic primary pain, and believe there is a link between this and my immune system. I can’t argue with them, I think they’re probably right.

That’s about the point my hope crashed down, because right now I couldn’t manage one of those days if it was spaced across a whole month.

I got back in the car and realised I couldn’t safely drive home because I was shaking so violently I couldn’t hold my foot steady on the pedal.

After 10 minutes of slow munching, I was finally able to drive home without my car kangaroo hopping down the road.

I’ve been fucked since. There was a minor stressor yesterday, Thursday, which immediately brought on another tremor attack as my nervous system is still so upset.

This probably came at a bad time where I’ve been feeling a little fed up of barely seeing my friends and family. The help I finally thought I’d be receiving is more likely to make me bed-bound again if I accepted it in my current position. It’s a bit of a blow and brings up previous frustrations I’ve worked hard in therapy to process. The loss of a normal life, the ability to work, the ability to exercise daily, the ability to compete at weekends to earn more medals and titles. The ability to walk normally and for more than a few hundred metres. What I’d give to actually walk Riley, and to have been able to continue my hikes with Bella while she was still with me. There’s so much loss that’s been brought up because the “help” I’ve been offered, and assured is possible, completely invalidates my very real restrictions.

The pain residency may not be right for me now, but when I think I can cope with it I will do it and go into it like I fucking mean it.

Nothings quite as bad as ill-fitting underwear.

Today I feel quite sad. I’m not sure if there’s a reason for it, I just feel like I could cry and I’m not sure what I’d even be crying about.

I’ve noticed that the increased pain has main me quite on edge. I’m quite to snap and get frustrated, and I feel awful that Riley’s usual behaviour of thinking certain commands are more of a suggestion, are getting under my skin. I’m not able to be quite as patient with this as I usually am.

That being said, this morning when he was being a pain and slapping his paw into my back to get my attention, I managed to turn it into giving him a cuddle before continuing to read. This stopped him choosing violence to get my attention, but I’ve no doubt he’ll do it again tomorrow.

I’ve also been feeling guilty that I haven’t been able to invest more time to my volunteer work for UKCVFamily. And not feeling like I’ve got enough in me to keep in touch with my friends. I’m painfully aware that more often than not friends are checking in with me before I’m checking in with them. And it’s not at all that I don’t care, it’s just not being able to think of much of anything beyond pain and fatigue.

At the moment I struggle to even know what I want for dinner. I just don’t seem to having capacity to form thoughts or make decisions. It makes me feel like a bad person and overthink about how uncaring or insensitive that makes me come across as for not being able to check in on those I love and care for so deeply.

It’s not been all bad; Tuesday I had a meeting with the Safeguarding Lead Trustee at UKCVFamily, and despite my pain levels that day we actually managed to get on top of a lot of admin. I’ve used today to spend a few hours continuing that work, which I feel good for being able to manage.

Now I’m led with an old feel-good movie and a 34kg weighted blanket in the shape of a snoring dog. It might sound strange, but until a few years ago I couldn’t identify emotions and I spent my life try to block myself feeling or expressing them at all. I’ve gotten better, but I still don’t know how to feel sad, to process it or sit with it. It’s very uncomfortable for me, as is allowing the tears to flow when I feel sad. Happy tears I’m totally ok with, but sadness still feels like a too-small thong.

When I discussed this in therapy, and explained that a sad movie is easy to cry at, but not my own sadness. She suggested playing a sad movie to help my body feel safe to express the sad emotions. So I should probably switch from the feel-good movie I’m watching, but I don’t feel like I can emotionally manage Marley and Me right now.

I’m still a work in progress, I think I always will be, and that’s ok because I’m at least trying to do the work, even if it feels too hard at times.

This is not the kind of “rest” I was looking for.

My therapist set me a goal for this week, to only journal about myself. It’s been noticed that often my sessions are filled with me talking about others, and very little about me.

I’ve tried to give it a go, but honestly my pain and fatigue have been so high that I’ve not tried in ernest to do this task.

However, because my pain and fatigue are so high, I decided to read the information leaflet that came with the Buprenorphine patches from the pain clinic. This led me to do a little googling and now I find I have to write, right this moment, to shift the emotions rolling through me before bed.

What I found was that Buprenorphine has a moderate drug interaction with my Mirtazipine because both suppress the nervous system. It also comes with a small risk of inducing Serotonin Syndrome. I thought to myself, well that doesn’t sound very good.

It also reminded me of when I was first put on Pregabalin, and I found the slightest change in dose made me quite dizzy and feeling high. I was gaslit over this by the in-house pharmacist at my doctors surgery, and the doctor said “it’s fine, it just means you won’t need as high a dose of pregabalin as others.” Why didn’t I raise this as a red flag then? The fact that no one thought to mention this interaction to me before prescribing pregabalin, and why it was brushed under the carpet after.

Having this memory come back to me made me decide to look up interactions between Buprenorphine and Pregabalin. There is a MAJOR drug interaction listed, due to the central nervous system depression, and the combination of the two could potentially put me in a fucking coma or lead to death. A COMA! DEATH??

Could you imagine what the combination of all three would do? Likely significantly increase the risk of these frankly terrifying outcomes.

When I had my call with the pain clinic, and he ran down the few options available, the leading two were Buprenorphine patches and medicinal cannabis. We discussed the risk of MCAS reactions from the patches, as they release histamine, along with my reluctance to use opioids given how intense the withdrawals are from pregabalin. But I made sure I asked if they had any interactions with my current medications and supplements but was assured they were safe in that area.

Maybe I’m overreacting, I’m exhausted and my pain really is quite horrendous, but a risk of a coma, seizures, respiratory distress and potentially death, doesn’t sound all that safe to me. Quite the opposite in fact.

I’ve been sitting on these patches for a little while, a break glass in case of emergency option. Well it’s a good job I read everything before taking anything now.

The second option from the pain clinic, medicinal cannabis has its own draw backs too. For instance it’s only available with a private prescription, with an estimated cost of £100 per month. I just don’t have £100 per month.

Of course I could do the illegal route, but I’m not young and hip anymore. I’m not afraid to admit I cannot deal with the anxiety of illegal drugs these days, I’m too old and tired. I’m also too emotionally aware now, and I know I’ll panic all the time.

I’ve looked into funding options, and there are some options if I did choose this route…the legal version of this route. The reality is that if I’m going to try something, I want science behind it and I want supervision. There’s been too many fuck ups with my care in the last 5 years, too many problems with pharmaceuticals , including the pain clinics blatant and most monumental cock up. But, I also don’t want to be sat at home, high with the munchies. I want my pain at a bearable level and I want to actually sleep through a whole night without it waking me up.

I’m angry and disappointed. I ordered the patches about a month ago, at 2am, whist writhing in bed in unbearable pain. I suffered like that for 2 whole weeks, and now the pain is returning to those levels. I can’t help but think what could have happened if I hadn’t of read the leaflet tonight and instead found myself reaching for a patch at 2am out of desperation.

It doesn’t bear thinking about, yet it’s all I can fucking think about. I’m usually asleep by now, I go to bed at 9. But tonight it’s not just the pain keeping me awake, it’s the worry of the what ifs. It’s the worry of the other patients being failed in this way, patients who don’t bother to read information for themselves because they blindly trust anyone with a doctor title. The older generation who perhaps don’t even know to research online, or even know how to. A doctor tells them to take another medication, on top of their other medications, and doesn’t check if it’s actually safe, or inform the patient to check if it’s safe.

It’s also the anger of another failure, in a long line of failures in my care in the last 5 years. But this failure could have resulted in my death. This failure could have led to me not seeing tomorrow, or my friends and family visiting me in hospital in a coma, being kept alive by machines.

I’m not sure what to do with this information, but I had to write on it because I have to be as calm as possible to improve the chances of sleeping, and because not releasing these heavy emotions makes my health issues worse. I’m just really sad to be back at square one, without a “break glass in case of emergency” option again.

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!!

I love…

Following from my last journal entry, I want to try something different. I want to try and work harder to acknowledge all the things I am, that aren’t “fat and vulnerable”.

I’ve always judged myself harshly, in a way I wouldn’t even consider judging others; in a way that I personally feel is despicable. I actively call people on judging people based on their physical features, so why oh why do I let my mind judge me that way?

That makes for an easy start. I’ve not always been the best human, I’ve made mistakes and hurt people, but from that I learned some heavy lessons. Now, I always try to be kind in every interaction and if I feel uneasy about something I’ve said or done then I address it with that person as soon as possible. A simple “I didn’t like how I spoke, I’m sorry and I’m going to do better”. If I know I’ve not handled something well, I will take accountability for it.

I love that I always assume the best in people and try not to judge them based on their worst day.

I respect others boundaries, I think that’s the absolute bare minimum everyone should do and so I’m always very conscious about not crossing lines.

During conversations, I sometimes catch myself trying to relate to something the other person has said. I know this isn’t helpful a lot of the time, so I try my best to correct myself and give people the space they need to talk. If I do this, then I actively redirect it back to their situation and remove my experiences from the discussion. I find it really triggering when others say things like “I totally know what you mean because….” Then the conversation is switched to them and the space I needed to talk is forgotten. But I try my hardest not to do this and correct it if I do notice I’ve done similar.

I am a people pleaser, and it’s always been a need of mine to try and help others. But I recognise, more so now, that it’s not always helpful or what that person needs. They also may not need my opinion but just the space to talk and feel heard. If I’m unsure, then I ask what they need from me in that moment so I don’t get it wrong.

Side note: a lot of these come to how I handle myself around other people, but since getting sick my interactions are much smaller and reduced. So I’m more conscious of these things now because I’m aware that the limited social interactions have had an effect on my social skills.

I like how, despite my regular masking, I am actually far more open and honest with those around me. And with anyone who asks questions. Like writing this blog, bearing my scars to anyone who reads these posts, because I spent my whole life hiding who I was to the point I didn’t have an identity or personality of my own. I’m really proud of the work I’ve done to get to know me and to get comfortable with letting others truly know me too, even if that still feels uncomfortable and scary at times.

I’m really proud of everything I’ve achieved in life, even when at the time I didn’t think I was accomplishing anything. Hindsight always comes too late, but I’m grateful it arrived and showed me just what incredible things I’ve been capable of at different stages of my life, including since getting sick.

I love that, no matter how hard things get and how frustrating life can be, I don’t give up. I mean I tried giving up once and something told me it wasn’t my time. I hold onto the relief I felt, and I’m really proud of myself for not letting those thoughts win since. Not just in that sense, walking is incredibly hard; it’s painful, exhausting and often unsafe. But I still walk; I haven’t given up on the idea that it’ll improve one day. I haven’t given up the idea of being able to work in some capacity or that maybe one day I might feel deserving of love.

I trust in my gut. My gut tells me that I will build a life that is fulfilling and full of love and joy, it just may not look like the old me imagined it and that’s ok.

My favourite part of me, is being Auntie Chlo. The fact that all the kids in my life love me and think I’m really cool. They certainly don’t see me as fat or vulnerable. They see me as fun, cuddly and a safe person to talk to. They might ask why I’m in a chair, but that’s quickly forgotten when they realise the joystick is in their reach and they can have a little ride-along.

I love the power of my writing. My English teachers would never believe that I enjoy writing, or that I write at all. But it’s powerful to me, and I’ve been told that it’s been powerful for others too. That means a lot to me, that these words on a page that usually take little thought, can actually mean something to others.

With the work I’ve done in therapy, I’m really proud of myself for learning to set boundaries. I’m still practising and I still get it wrong sometimes, but I’m trying and that’s a huge improvement to previous me who would always put others first, often to the detriment of myself and my needs and wants.

I really love my hair and my eyes. About the only thing I do for myself now is pay for a decent haircut at least once a year, because I now love the hair that I spent half my life resenting for being so big, unruly and heavy.

I’m really proud of myself for when I came out to my friends and family, who apparently all suspected I might be gay. I’m also really grateful for how they all received it, how they held my truth with gentle hands and how they let me come to the conclusion on my own. The old me, who didn’t know who she was, would have never had the courage to admit that part of me existed. In fact, she thought I might have been a danger to others because she didn’t understand her thoughts and wondered “is this how serial killers or predators think”. I feel really sad for her, that she spent so long fearing what she might become, because she just didn’t understand herself or her thoughts. Life could have been gentler if she only knew that she was bisexual and not the next Jeffrey Dahmer.

I really love how I appreciate the little things, especially now. How I run (waddle) as fast as I can to go and stand in torrential rain, bare foot. Or how I actually enjoy watching the bees collect pollen in the garden and how my heart melts when Riley gets so excited his tail spins in circles. I love how the breeze feels when I’m out in the fields.

I love how deeply I love. I love that I’m not afraid to tell people I love them or appreciate them at any opportunity because you just never know if there will be another opportunity. So I say it in the present moment, and don’t wait.

I love that I’ve chosen rescue dogs to live alongside me and accept me as their Velcro human. I love that Bella loved me for 12 long years, even when life slowed down for us. I love that Riley is forgiving of me on the days when I tell him off because I’m having a bad day – though he is still a twat who’s incredibly stubborn. But he’s my stubborn twat and he’s really happy now, especially compared to when he arrived. I gave them both homes full of love, where they could be valued, spoiled and happy.

I’m glad that I try to use my pain and my experiences to help others feel less alone. To feel lonely is one of the worst emotions, especially feeling alone with health concerns. I’m really glad I try to turn that into something positive.

I love that I can still laugh. When life is hard and complicated, it can be really easy to forget you’re still capable of having fun and laughing, that you still deserve those things. So I’m glad I’m quick to laugh.

I love that as I’m writing this, I’ll get halfway through a point and suddenly think of something else. I genuinely didn’t know I loved this much about me. It’s probably a good place to end this, or I think I’ll be using a lot of energy to think and type.

My friend told me to try affirmations and I genuinely think this has helped a lot. I’m not perfect; I make mistakes all the time, especially with myself. But I’m really trying to treat myself like I do others, it’s just the undoing 32 years of programming can be quite hard at times.

As for how frustrated I’ve been feeling, I know it’s normal. Sometimes it’s just a lot louder than I’d like, but it’s led me to do some really honest writing. I’m aware I’ve not been journaling as much, and that could be why things have gotten so heavy to carry on my own, but maybe I needed to reach that point so I’d let people in and start writing again.

Today is also my 5 year vaccine anniversary, so it feels really nice to shower myself with a little love on a day that can be quite triggering.

I need a little moment to feel sorry for myself.

This one’s going to be quite tough for me to write and even harder to post publicly.

I’ve been feeling really emotional lately, teary, ragey, sad and frustrated. And therapy today helped me get to the bottom of it, and my therapist asked whether it would be so bad for me to let myself feel how I’m feeling, and let other people see that too. The answer was that I’m scared if I let myself feel it, it’ll be all consuming. And if other people heard it, they may think I’m attention seeking or that I just need to lighten up.

I mask a lot, but for the most part I can be accepting of my limitations and situation now. That doesn’t make it any easier, it just means I use less energy fighting it. But often I mask and tell people I’m fine or coping well. I’ve always done that.

My situation is shit.

Everything is hard, whether that’s getting up in the mornings, having a bath, playing with Riley, or just trying to get through the day. Right now, I’m sick to fucking death of everything being so hard.

I’m sick of needing help, I’m sick of fighting my inner turmoil to try and accept help, I’m sick of it all.

Saturday mum and I popped out for a few bits. The main reason was to go to curry’s to look at some tall fridge freezers to see what would be easier for me, because our under counter fridge and chest freezer are becoming more challenging for me to access. Veg drawer – too low now. Freezer – can barely lift the baskets to access everything underneath, also can’t reach down to most of it without difficulty. I hate that this is my reality, but it is. After we decided to have a little look in TK Maxx. I haven’t been out for a while and just fancied a mooch.

Back in December, I sent a letter of complaint to TK Maxx for how inaccessible their Trowbridge store is and they assured me they’d forward it to their manager to reassess the store. That, quite clearly, hasn’t happened. In my chair, I can’t turn in the aisles, and some of them aren’t big enough for me and someone else to pass. Added to that, some people are just cunts. So I might be near the end of an aisle, that fits both of us, and they ignore me when I ask them to let me pass. This means I then have to reverse, not being able to see behind me and trying get out backwards. But of course, someone else might come down the end of that aisle I’m trying to escape from and then I’m trapped. Purely because some people are massive twats and the store isn’t really accessible for wheelchairs. They also love to stack baskets in the middle of aisles.

I left feeling like an inconvenience, like I just wasn’t welcome. A complete hindrance to everyone else’s shopping experience. I still needed to go to the garden centre to get Riley some more balls, and we said we’d grab a coffee there. Feeling hugely embarrassed by being an inconvenience to others I used just my stick, despite the fact my legs were buggered. We got to the cafe and mum necked her coffee, then said she would leave me there and have a quick look at the flowers outside.

Overwhelmed by my limitations and cunty people in TK Maxx, I burst into tears. I wanted to look round the flowers too. Mum ran to the car and got my chair and we made sure I didn’t go home feeling unwelcome in the world. We spent an absolute fortune and Sunday I made sure to totally fuck my body by planting them all.

The result being I got stuck on the ground in the garden, after my body collapsed on me, and we spent the next 20 minutes trying to lift me off the floor while in complete hysterics. I did this, because what I needed was to feel like I could do something. I had to plant that planter and I didn’t want help because I needed the sense of achievement. I needed that boost. The caveat is that I’m in more agony than usual and can barely move. There’s always a consequence, even if I don’t push that hard.

The reality is that everything is hard in one way or another, and every single day I find something I can’t do. I’ve been fiercely independent my whole life, so to need help is incredibly uncomfortable. I’ve always been the one that helped everyone else, the one my family didn’t have to worry about. But I can’t be her anymore, my body won’t allow it. But I hate asking for or accepting help still. I hate being seen to not be capable.

I also feel left behind. Not that people make me feel left behind, but that I’m coming up to 33 years old and I don’t have a career, a home, or a partner and realistically I don’t see those things on the horizon.

Yet, I spend my days dreaming about having my own bungalow where I can have people over for bbqs and games nights, where I can play Auntie Chlo and have the kids in my life come make a mess of my kitchen with cupcakes and crafts. Where I can build a life of my own, independently, around my limitations. A life filled with love and mess and joy. A life I know I can never access without the ability to work or afford a home of my own.

This brings me round to the other reason I mask, to the reason I don’t really let my friends see me like how I was today in therapy. I’ve never said this to anyone until therapy. My biggest fear, aside from spiders because who needs that many legs, is that people will see me how I see myself.

I’ve spent my whole life hating my body, I never felt at home in it. In fact, more often than not, my body disgusted me no matter what size I was. Until I started powerlifting, and the last few years before getting sick I can wholeheartedly say that I loved my body. It showed in the way I took care of it, in the genuine smile I’d have, in the photos I’d willingly take and post. I finally felt like me and my body was so strong and capable. I felt so connected to every fibre, cell and muscle.

Now, I’m back to hating my body; hating how it looks, hating how it betrays me and hating how it makes me feel ashamed to be seen (along with being ashamed to be seen as disabled). I’ve always had a body dysmorphia issue, and now it feels more vicious than ever.

Fat and vulnerable. That’s how I see myself now, and I don’t want to see myself that way. And I really don’t want others to view me that way. So I go out with a heavy dose of anxiety that I might bump into someone who knew me before, and that this will be how they see me. But really, I know there’s nothing worse than the fact that I see myself this way.

I know my friends and family don’t view me that way, they’re far too bloody amazing to do that. But it’s the fear about it coming true, and then the looks of pity. Because I pity myself enough already, and I hate how I view myself already. I couldn’t cope if others viewed me that way.

Truly the idea of posting this is terrifying but I also think I have to. I’m not letting people in, I’m holding on to that mask; the brave face and words of platitude. All so people don’t know just how fucking hard every day and every task is, so they don’t know how much I resent that, how much I sometimes envy them and that ultimately there’s a part of me that just hates myself and my body.

That’s a brutal thing to admit, and, unsurprisingly, it makes me feel very vulnerable. But right now the bucket is overflowing and I can’t keep filling it up by not being willing to face these feelings and thoughts. I’ll be ok again, and I will feel genuine acceptance of my current situation again. But right now, I just have to be honest with myself, let myself cry, let people in to this dark reality and empty the overflowing bucket of emotions.

If you’ve got this far, thank you and I hope this hasn’t been too hard to read, or triggered any feelings of pity that I won’t know how to handle. I appreciate everyone who reads this little blog of mine, and I do have some appointment updates to write about. But this one had to take priority, or I’d have put the mask back up and carried on like I’m not ready to scream or cry at a moments notice.