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.
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.
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 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.
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.
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.
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.
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!!
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.
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.
Today, I woke up feeling like I needed to write. It’s true that I’ve not been writing a lot recently, I’m barely even journalling. Instead, I’ve been living, living and resting. I feel like many things have happened, that each deserve their own post. However, I just feel too exciting to break it down and drip feed it to you, so this may be a little longer than my usual ramblings.
Last time I posted, I wrote about my two very successful appointments and there’s no updates there. But I have been doing a lot of the research homework I was given by the FND neurologist, which has led me to make some changes to how I manage my time and energy, especially off the back of a really rough winter.
The winter saw my baseline energy level dip quite a lot, which has made everything so much more challenging. So, I made the decision that I had to be intentional with where and how I spent that energy. I knew if I wanted to achieve my 2026 wish list, I had to reduce crashes, reactions and stress. What some may not know, is that when you’re living with multiple chronic illnesses your body is always under stress. Then add in MCAS where you react to stress and CFS where you haven’t got the energy to deal with the stress or the reaction, and it’s a really shit cocktail. It’s like having a go at Ninja Warrior UK, in a wheelchair.
I have a few tools in my arsenal to reduce my stress levels, but then there are the normal life stresses which I have to actively avoid. That’s not to say things don’t piss me off, believe me they really do, but I have to use my tools to release that frustration or anger. Arguably the biggest tool for this, is to either write about it or handle it in the moment. I’ve been a life-long people pleaser, so saying when something annoys me isn’t natural, but I have to learn to release things. Eckhart Tolle says, if you can fix something in the moment, then do so, if you can’t, then accept it as if you have chosen it. I live strongly by this and it’s helping me honour my own beliefs and what’s in my heart.
But what has all this led to me achieve? I started the year strong by ticking going to a festive light show of my wish list. Hannah and I had a lovely, and freezing, evening at Longleat. I got to eat a burger and just have a laugh the whole way round. I always feel self-conscious when I first use my wheelchair around friends, and this was the first time Han had seen me use it. But as with everyone else who’s seen be in it, it felt so normal. We had a good laugh when my wheels got stuck on the walkway through the lights and I couldn’t turn. It was just a brilliant evening all round and a great memory to start the year off with.
After this, but not because of it, my health got the better of me. I was reduced to doing very little, with lots of pain. Adding health appointments didn’t help, the anxiety and apprehension drain my energy. This down time gave me the big wake up call I discussed above, the realisation that if I was going to achieve anything this year, I had to make some big changes and be strict with them. And it’s been hard. When your health rarely lets you keep plans and see your loved ones, you will start disrespecting your health to do things. Disrespecting is probably the wrong word, but I wasn’t honouring my bodies needs. If an on the day invite arrived, and I didn’t have plans, I’d accept it. Even if that day was clear to allow me rest for plans later that week, or if accepting those plans meant I also had to have a last-minute bath that I didn’t have the body battery for. I just did whatever it took to try and see my loved ones.
Now? Now my diary is planned at least a week in advance. There are no activities planned on consecutive days. Lower-level activities like a dog field with Riley I can book on my rest days, providing the following days activity isn’t high level. Some weeks, I’ll have two social activities planned, other weeks I’ll have none. It all depends on what’s been scheduled the week before. This doesn’t always go to plan either, because most days my body doesn’t cooperate with whatever is in my calendar. I have to make a judgement call each morning, an assessment of how I’m feeling, how my body battery is, how my sleep was and then decide what I can manage, and if a plan needs adjusting to make it accessible to me that day.
That being said, there was a last-minute plan that came up that I threw the playbook in the bin for. On Thursday April 16th, the report for Module 4 of the UK Covid-19 Inquiry was released. In summary, it was disappointing for the vaccine injured and bereaved. Though we were acknowledged by Baroness Hallett, who said, “Those who were damaged by the vaccine rather than protected deserve proper recognition.” It’s a very powerful sentence, but one that isn’t reflected in the recommendations made.
Despite repeated requests, the Inquiry had still not published the hundreds of case studies submitted by UKCVFamily members. Case studies that the founder, Charlet Crichton, spent months supporting and guiding each member to write. She worked with everyone individually to write a 500-word statement of their traumatic experience post-vaccine. Not just those who were injured, but those who lost family members to the vaccines.
That Saturday morning, the Chair of Trustees and award-winning author, Caroline Pover, video called me. Both still in bed and sleepy faced. She had an idea, could I help? Yes, yes I fucking can. If the Inquiry aren’t going to follow their motto of “Every Story Matters” and release these case studies, then we will. Sarah, the Safeguarding Trustee, Caroline, and I worked tirelessly for five days. Writing, editing, proofreading, emailing, more emailing, gathering consent from everyone who submitted a case study, and then the back and forth with queries. There was a lot of emails. Saturday morning, we started working and on Wednesday evening, Fallout from the Rollout was sent to Amazon for publishing.
The Monday prior to this, I started reducing my pregabalin again. That was why I had a clear two weeks, because I didn’t know what reaction I would have. Last year it saw me presenting to A&E and asking to be sectioned for my own safety, so I was making sure I was prepared for whatever came. The only thing I didn’t prepare for was how it impacted my sleep. I sleep through the night every night, but it was entirely non-restorative. My body’s stress levels weren’t reducing overnight, and I wasn’t getting enough REM, so I was waking each day with 20% body battery. To avoid crashes and flare, I try to avoid dropping below 20% body battery. Waking up with only 20% was torture and this lasted for over two and a half weeks. Starting the book, just five days into the reduction was a huge challenge. But not one I regret.
We poured over every single case study with love, respect and compassion. When we had to make edits, they were minimal to keep the case study as close to the original as possible, to keep the voice of the person who wrote it. The emotional toll of those five days cannot be underestimated, because every single case study was personal to us. These were the stories of our friends, our family.
For me, everything that happened, happened exactly the way it should. It felt so right that it was us releasing those case studies to the world, because to us those voices really do matter; they always have.
To have been part of the publishing team, working with Caroline and Sarah for this project was a real honour and something I don’t think I will ever forget. The pure adrenaline rush, waking up Thursday and seeing the kindle copy had been released and being the first one to order it. Then watching throughout the day as the hardback, paperback and audible were also released. What a fucking rush. I will forever be grateful to Caroline for inviting me to work on this project, and I will always be grateful to the members for trusting us with their stories.
The following weekend was my sister’s birthday, so I had very little time to recover and come down from my high. A huge thank you here goes to Sarah for reminding me that I had run out of L-theanine.
I rested as much as I could, but the weather was heating up and my body was throwing up more warning lights. I have orthostatic intolerance, which is mostly manageable, until it gets hot. This means that I get tachycardia when stood up, or sitting. This leads to dizziness, feeling faint, fainting, sweating, and fatigue. I did what I could, but ultimately by body was not getting the rest it needed. Nevertheless, Sunday came around and we had a family lunch planned.
We kept it simple with a pub lunch, and I’d been eating really well to avoid histamine, so I decided that as long as I didn’t have MSG, I’d eat whatever I fancied. This day I also met my sister’s boyfriend for the first time, so I put my mask on and set off to have a fantastic afternoon. And we did have a bloody fantastic afternoon, full of laughs, good food, and terrible jokes. Often the family dynamic can be tense, but this was just incredibly relaxed, and everyone had a great time celebrating my sister’s birthday. Naturally, this didn’t mean she escaped being roasted by me – it was Sunday after all.
For her birthday gift, I was going to be ticking something not just off my bucket list, but also off hers. I’d managed to get us tickets to see Lucy Spraggan at the Cheese and Grain, Frome. My diary was mostly clear from her birthday until May 1st, the day of the gig. I’ve not done a gig since the vaccine, I have terrible sensory issues, particularly with light and sound. It’s why I have tinted glasses and dark sunglasses for outside, along with multiple ear plugs for each occasion. I was nervous for how I’d cope with a gig, indoors, and big crowds. It turns out I had nothing to worry about.
My mum picked my sister up from work and brought her home, to save me that journey. The evening was all about energy management; Lucy wasn’t getting on stage until the time I’m usually asleep. They had a Greek food van at the venue, so we were going early so we could be as relaxed as possible, have some food and be ready for the early entry I’d arranged.
We arrived, got some drinks and ordered our food. We found a quiet table, where we could just sit and chat while we waited. Food arrived and it was bloody marvellous. If you hadn’t noticed, food is a theme for me, I try to enjoy it when I can and when I’ve prepared to eat something risky. I had antihistamines and mast cell stabilisers; I was going in hard!
The next part is irrelevant, but funny. My routine is I eat, and then I take my evening medication which includes liquid pregabalin. So, in a busy car park with a queue snaking round, and people still arriving, I stood there with my syringes measuring out my dose. I realised I was being watched by the next car, who gave me a big grin, so I can only assume they thought I was preparing to have a damn good time.
In we went, and thanks to the early entry and my wheelchair, we had time to refill our drinks and make our way to the front. And I mean right at the front; I’ve never experienced that before. We were at the barrier and Lucy, and the support acts were just a few metres away. I thought I’d struggle with the lights and sounds, but this was an acoustic tour, and I didn’t need ear plugs or anything more than my normal tinted glasses.
What a fucking experience for the memory books this was. My sister and I have been Lucy Spraggan fans for over a decade, and we both find her and her music relatable in different ways. To share this evening with Tash was something really special, and we both cried a lot. To make it even better, I didn’t fall asleep!
The day before, I’d slept terribly, so I expected to really suffer, but that didn’t happen. The L-theanine had arrived on the Tuesday, and my sleep was improving. So, despite not sleeping well the night before, I was sleeping very well since. I got into bed at midnight, and I can’t even manage midnight on New Year’s Eve, so waking the next day was tough but it was a restful sleep.
If I’d have done this last year, or even a month ago, I’d have been sent into a torturous crash that would have lasted weeks. However, I coped for the gig and I’ve coped since. And the only thing that’s changed is building better habits and being stricter with my time and energy. Along with supplements and nutrition that support by body in its recovery.
To add to it, on the Wednesday before the gig I went wedding dress shopping with Laura and Kalie for Laura’s wedding. I’ve never done this before so I was beyond excited. We had the best time, with Laura looking beautiful in every single dress she tried on. I think Kalie and I had the most fun, getting to pick through the dresses for Laura to try and I obviously cried. This was a really lovely, intimate experience than I’ll treasure.
I’ve achieved more big things this year, than I have in the last five years. And my health is worse; that’s the crazy thing. I have LESS energy, but because I’m working with it rather than making it angry, its rewarding me with these experiences. It’s like a Gremlin, with all the rules you must follow and if you don’t then everything is a challenge.
Learning to say no to plans or cancelling plans already made has always made me feel incredibly guilty. My friends and family all have full-time jobs, families, pets, children, and husbands. I’m just me and Riley, and on the face of it I have all the time in the world. Before this year, I would think that I should work to everyone else’s schedule and availability, because I’m always desperate to see my loved ones, I never feel like I get to see them as much as I want to. But the reality is that for about 10% of my time I am functional and trying to push that to 15 or 20% is detrimental to my health and to my life. By honouring what my body and health needs for that 90%, I get to truly enjoy the 10% and not get stuck in the crash cycle
I have to use my wheelchair and not be embarrassed by that. I have to eat food that doesn’t excite me to reduce reactions and enjoy occasions with “unsafe” foods. I have to allow people to help me when I need it. I have to say no to plans that don’t fit in a week that’s already been carefully planned, and sometimes I have to cancel. If I do these things, and that list doesn’t even come close to all the things I have to do, I get to really be able to experience more of what life has to offer. Because what life has given me this year has been incredible, I can’t explain how monumental it is to truly enjoy a lunch out and being able to be fully present rather than dulled down by pain, fatigue, brain fog and intense MCAS reactions.
This Saturday, I’m going to Gloucester with mum for a day out with my brother, his fiancé and my niece and nephew. I’m really excited to see how much I can enjoy of the day, just a week after my first gig since the vaccine when normally I would still be bed bound. I look forward to telling you all about it, and how the rest of this year goes. There will inevitably be ups and downs, I don’t doubt that I’m going to get it wrong at times, but I know I have the support of everyone around me and I hope there will be more ups than downs to come!
Today was another appointment that went well. It usually does at my reprogramming, they’re stress free and the staff are a good laugh.
I was able to discuss yesterday’s appointment with my neurosurgeons nurse practitioner, along with the issue that widespread inflammation is causing me. Especially in relation to my Hemicrania and occipital neuralgia, which is to say it becomes excruciating when I have high inflammation. Along with my head, it causes nerve pain in my hands and feet especially.
With my head on top, it’s truly unbearable and usually arrives around evening time. Currently the only thing I can do is apply volterol, but I have to limit how much of this I can use. Despite this, the high inflammation is getting worse, happening upto 3-4 nights a week.
However, the NP was fantastic and is writing to my GP to push them to actually investigate this rather than passing it off as an another complex symptom they don’t know what to do with. We’ve ruled out MCAS as the cause, so we need them to look for the reason this is happening and getting less manageable. So to know that she’s going to help push my doctor to investigate this properly is reassuring.
Overall, while the lead up to this week was daunting, I’m really happy with the outcomes. It feels like I’ve made the most progress with these issues than I have in the last 5 years. At least in terms of the NHS and getting some support. I do a lot myself as I’ve previously discussed, but I am limited in my knowledge of what my body is doing and why it’s so challenging to live with the body I have now.
There’s only so many supplements I can add in the hopes they fix the issues I’m dealing with. They help to an extent, but my legs and inflammation are beyond anything I’ve tried to help.
Now I’ll be resting for the foreseeable future, with a little sigh of relief that this week I was finally seen, heard and most of all, believed.
I just came to do a write up on today’s appointment with a neurologist, who specialises in functional neurology. Or dysfunctional.
Arguably this may have been the best appointment I’ve had in the last 5 years, aside from actually explaining why my body is misfiring all over, she’s actually doing referrals to help me manage it all more effectively.
Something happened which initially triggered the symptoms I have. Now I’m stuck in a cycle where the symptoms have become the triggers, like how when I’ve done more than I should have (sometimes just washing up), it then triggers internal vibrations and tremors. Or pain, inflammation and neuropathy.
She believes my main issues are chronic fatigue syndrome, dysautonomia and FND (Functional Neurological Disorder). These cover everything, including tremors, POTS, light sensitivity, cognitive dysfunction, temperature regulation issues, sensory issues. The list really does go on and the problem is that I’ve got a LOT of it. She pointed out how every key symptom of ME I have, then add in dysautonomia and FND issues and it’s the world’s shittiest cocktail.
She explained how the infrastructure in the NHS limits what help is available, despite how much she wants to help me. That being said, she’s doing a lot. First step is for me to do research using websites, apps and podcasts/audiobooks she’s sent me. These will give me a better understanding of how it all works together, the idea being that the more I understand how my body works, the better I can listen to my body and try to reduce triggers. She’s also getting me on the list for the FND Education course to help with this too.
The idea around “use it or lose it” is true, but it has to be using it while trying to avoid triggering more symptoms to kick off. So she’s referring me for neuro-physiotherapy to help build better connections between my brain and body, and maybe even see some improvement. But at least better management. This may also help bring my body to a place where I could consider a manual wheelchair in some situations, to bring in more movement. She’s happy with how/when I use my electric wheelchair, but she doesn’t think my body could currently cope with the exertion of using a manual chair.
She’s going to ask my GP to finally refer me to a chronic fatigue clinic. She can’t do this referral, given it would come from a service which technically covers ME/CFS it would likely be refused. So asking my GP to do it should give me a chance of getting into this service to get a management plan for the CFS.
She’s happy with the therapy I’ve done with Lee, and that I’m continuing with a new therapist (I still miss Lee!). So she isn’t going to do a MH referral for CBT, for which I’m grateful. If you’ve been here since the start, you’ll know CBT put me in a very dangerous place before I found Lee.
I also have an app for tracking energy and emotions, including identifying where in the body I feel this emotion. I do a lot of energy work, and clearing emotions, so I think this will help strengthen these practices a lot.
Needless to say, I’m fucking exhausted. It was in an old building at Southmead, where the car park is at the top of a hill. My car was parked higher than the roof of the building I was in. My legs are wrecked, I’m home with some tremors and internal vibrations and I’m totally empty. But I do think this appointment was worth it.
There’s only so much I can do myself to help manage symptoms, but being disabled with absolutely no support, physio or occupational therapy is hard work. It’s certainly not something I’m going to have the knowledge on how to properly manage or even fix. So to finally have someone who’s referring me for help with this feels like a huge success, along with understanding why it’s all happening in the first place.
And bonus points because she highlighted that it all started after my vaccine, including the Hemicrania and occipital neuralgia. I don’t raise this in appointments now, but she’d read my records and made the observation herself which was great.
Now I’m switching off; tomorrow I have to be in Southmead for reprogramming at 9:20 am, so I’m going to need all the rest I can get to be able to drive safely there and back!
