Toes, knees, shoulders and head – Chronic Illness Challenge, Day 30! 

Finally, starting with your toes and working your way up to your head, name each body part and how you Illness effects it, then say something you like about it. 

Well this could be interesting! 

  • Toes – my illnesses cause problems with all my joints and muscles, but, specific to my toes (lol)… lets see. I fall a LOT (according to the fall prevention team) and once fell down the stairs and broke my toe. Also when my immune system is particularly bad my toe nails fall off (ewww!). Things I like about them, erm.. I only broke the one, I have another 9 and at least it wasn’t a broken leg. 
  • Ankles – once again with the joints and muscles. My right ankle is more of a problem than my left, it crunches if I move it too fast and gives way when it fancies it. I like the fact that the left one doesn’t do that! 
  • Knees – my knees are both problematic, they like to give way when they fancy it. I suffer from water on the knee on the right one but strangly not the left, it needs draining sometimes but I mostly deal with it. I like that my knees aren’t badly affected joints! 
  • Legs – legs in general. My muscles are all weak, partly directly to do with the illness, partly because of time spent wheelchair and be bound. They take a while to get moving every morning and sometimes they refuse point blank to accept any body weight at all. Sometimes I am left completely unable to weight bare on them and I am almost always using some kind of walking aid to get around (mainly upstairs where I can’t get my wheelchair). I’m usually in some kind of pain In them.  Good things about my legs, they usually WILL weight bare, usually with the help of my wheelchair and walking aids they do let me somewhat independent. 
  • Hips – I have pirifotmis syndrome which  causes problems with the muscles that connect the hips to the base of the spine. I am always in pain with my hips or my back and my right hip dislocates a lot. But I have quite wide hips which I like because I think it helped with my pregnancy with Wildchild. 
  • Stomach (and all the stuff in it lol) – I have IBS and gastritis which makes it eating a bit annoying. But I like the fact that these conditions are manageable and that my body provides a home for Wildchild. 
  • Chest – I have asthma and problems with the muscles between my ribs. But I’ve always liked my boobs! 
  • Neck/back – my spine is curved in two places, causing my ribs to be deformed, my neck curves the wrong way and I have an anteriorly slipped disc in my lower back. However I do have this chunk of apparently perfect spine in the middle of my back. I’m very proud of my perfect bit!!!! 
  • Arms/wrists and hands – my arms like to jerk and twitch uncontrollably, which often causes me to throw things. It’s embarrassing, annoying and dangerous. I have had tendinitis in my right wrist since I was in high school. But I like what I can use my hands to create, to craft and to crochet. 
  • Head – I have cervicogenic and thunderclap headaches, which are not fun. I also have almost costant brain fog to differing levels of severity. I do however like the creativity that comes out of my brain. The side of my brain that allows me to live in the fantasy worlds of audiobooks! 

So, that the 30 day challenge done! I’m so proud I managed to do it! I came out of the chronic Illness closet! It’s been a difficult experience, hard to write, probably hard to read and I’ve (sadly) lost a few friends along the way. But overall, I think, it’s been worth it to raise a tiny bit of awareness of what life is REALLY like with a chronic Illness. 

Thank you for reading and following me on this journey. I’ll take a few days and then I’ll be back. My dad wants to guest blog and tell people what it’s like from his perspective! Which will be interesting to read! 

See you soon!!! 

In Sickness and in Health – Chronic Illness Challenge, Day 26

What impact has this had on your friends, family, partner, parents etc. 

Wow. Yeah. My Illness has had a huge impact on those around me. Mainly those closest to me, namely my husband, daughter, parents and sister. My friends have been affected by it but not as dramatically and not as often. 

My husband and I had been together for 6 months prior to me becoming seriously ill. He ended up working part time and moving in with me and my dad to care for me during the day. His job choices have always been dependant upon my health, he cannot work outside of the town we live in because he needs to be able to get to me quickly and he doesn’t drive. He has had to have unpaid leave when I was very unwell and unable to look after Wildchild as I am classed as a dependent. He has had to feed me, bath me and carry me to the toilet. He has looked after me in hospital and out. He has accompanied me to endless doctors appointment, made a ridiculous amount of phone calls on my behalf and fought my corner every step of the way. He has pulled me off the emotional floor and totally held me together when I needed it. He has cuddled me for hours when I could and not touched me at all when I couldn’t. He has picked up so many prescriptions, sorted and dispensed all my medications. He has translated my backwards messed up sentences. He knows before I do when I am about to enter the land of “you’ve totally overdone it” but also understands my want to occasionally pretend to be normal (whether or not he agrees with it is another discussion entirely). I could go on forever he does so much for me, including making sure that I eat and being my personal chef. I don’t think I thank him nearly enough. But I do love and appreciate everything he does and, although I hope to God never to have to repay the level of kindness he has provided me with, if I can I will in a heartbeat. 

My parents. When I first got really sick I was living with my dad, it was just him and me. He has always had my back (and I hope that he knows I always have his). He has always been my rock, my safe place, my home. Throughout my childhood anxiety he was the only one who understood, the one I could turn to and, at one point, literally the only person in the entire world who could get me out of a panic attack.  He has been behind me every step of the way, he has sat in surgeries with me arguing with doctors. He has fought against the benefits system with me and both won and lost. He has paid for me, budgeted with me and helped me to stand financially on my own feet. He has been my taxi, my hospital appointment companion and most importantly my friend. He has sat up a night watching me to make sure I am still breathing and doubtlessly he has worried about me every second of every day. Once again I could carry on forever about how much he does for me and how much I appreciate it. I hope he knows how awesome he is, how thankful I am and how much I love him. 

My mum and sister are wonderfully helpful and supportive, I think that sometimes it harder for them to understand as they have not both been around since the very beginning and haven’t been hit by the same chronic Illness bus as my dad and husband have. They help me however they can, mum makes me food and my sister takes me places they both look after Wildchild and take her to do fun things that I’m not able to do with her. 

Finally, Wildchild. Some people might say that she is the least affected as she has never known any different. Whilst it is true that she has only ever known what it’s like to have a chronically ill mother, no a healthy one, she is also the closest person to me. She relies on me and is dependant upon me. There are things that she cannot do that she would like to because I am sick. There things she knows how to do and things she has to do that most other children don’t because I am sick. She has to put up with people looking at me, asking questions sometimes being rude. She cannot have me do all the fun things with her that we would love to be able to together. She brings me love, laughter and snuggles everyday. She tells me she doesn’t care that I’m sick, that she would still choose me as her mum against all the healthy people in the world. It does affect her but she takes it all in her stride, we find our own ways around everything and we have a wonderful happy time together. She keeps me going and I love her. 

What Social Life – Chronic Illness Challenge, Day 24. 

How have you managed to juggle your social like throughout your Illness?

Firstly another short but sweet entry I’m afraid, really not doing well right now. So cannot spend a lot of time actively doing anything, let alone something that involves a screen. Thankfully the subject doesn’t really leave me with much to say.

My social life, well what social life? I probably go out socially once or twice a year, for a maximum of 2 hours each time. I have to rest more than usual for about two weeks before and the payback is almost unbearable so these social encounters tend to be limited to important events such as weddings.

Managing even my nonexistent social life is still a pain. Every event I am invitied to has to have a serious amount of consideration. How long will I have to rest prior to the event?  How will I get there and back? Does the venue have wheelchair access? Are there people attending that I am not happy seeing me ill? Is it going to be loud/bright/both? How many people will be there? How long can I go for? What meds to I need to bring with me? Is it important enough to me to suffer the payback? Most of the time the answer to that one is no, maybe that should be the first question, would save having to think about all the others.

Basically my “social life” is limited to in house stuff with family and very close friends (even then with regular rest periods). School runs (with support from mum/dad or other school mums).

Then, of course, there is the place where my nonexistent social life ended up. The internet. Thank God for my online friends, spoonies and non spoonies that have loved me, helped me and supported me through so much!!!! You are awesome wonderful people and I’m thankful for you every single day! Mwah!

Spoonie Friends for Life – Chronic Illness Challenge, Day 20.

Have you met anyone else with your Illness? Did it help?

Sorry again, today this will be short and (hopefully) sweet. My anxiety it’s really bad at night right now so I’m not really sleeping. It’ll be fine when our finances are sorted again, but until then I’ll just have to get on with it. So excuse me if none of this makes sense, brain fog is a bitch sometimes.

I have managed to meet a few other people with ME and fibro over the years and yes it was helpful. This is physically, however I think the most support and help came from an online community I joined when I first got sick. AYME (Association of Young People with ME) literally was a godsend, it helped support me through the diagnosis, advised me on pacing and provided me with a community of people who understood exactly how I felt and what I faced. Having ME at anytime it’s hard by I truly believe having developing it as a teenager is particularly difficult, as you miss out on being “young” in the same way that teenage parents often do. I could ask questions on community boards and get information and support.

I also have a lot of friends with invisible chronic illnesses that have similar symptoms and affect their lives in similar ways, illnesses like lupus. My best friend has AS as well as fibro so we can support and understand each other. Spoonie friends are awesome, not because others don’t care, but because other spoonies have an extensive knowledge of how it affects you, what cannot be seen and exactly what payback actually is. They can sympathise on your bad days, congratulate you on your better days (days that perhaps non-spoonies wouldn’t see as much of an achievement) and understand if you go for weeks without being able to speak to them.

I think support from others with chronic illnesses is really important and help for. My spoonie support network has made a massive difference in my life with my chronic collection. Spoonie friends are awesome friends!



You Find Out Who Your Friends Are – Chronic Illness Challenge Day 15

*we interrupt this challenge for a small rant and a HUGE thank you* 

When I agreed to do this Challenge I agreed to write for 30 days, I agreed to answer questions set to me, I agreed to be real, I agreed to be honest. I knew it would be hard to write, physically and emotionally. I knew it would tire me, I knew I would feel sad, I knew I would cry. I also knew that I would get to see all the positives that came out of my chronic collection and that these would inspire me with love and hope. I knew I wouldn’t always get positive feedback; this is the internet after all. 

What I didn’t know it seems, was that this negative feedback would come from old friends. What I didn’t know was that they think of me as a “victim” of my disease that moans incessantly about it, even though I only started taking about it 15 days ago. I am NOT a victim of anything, I am still here. I did not lay down and accept my life as it was when I was at my worst. I fought tooth and nail for the quality of life I have now, although it’s not much, and crap compared to normal, I FOUGHT to get here, I am not a victim. Because I am physically incapable of doing somethings, because I cannot go out socially, because I cannot work outside the home, do not mean I have become a “victim” of these illnesses. It is NOT A CHOICE, I physically am not well enough to do those things, dont you think I miss them? A victim would not make the choices I do, schedule their life like I do, pay the payback I do so that I can leave the house of a couple of hours. A victim would lay there and take it, give in. I am not a victim. I am sick, ill, disabled, unwell, chronically ill, however many other adjectives would you like, but I am NOT a victim. 

Having this feedback led me to pop a post up on my personal Facebook profile explaining how to not see my blogs if they were annoying people. I explained briefly that I was upset, not that I had had negative feedback but it was the hard hitting, crushing kind (as I literally fight my arse off every day to not become a victim, as that would be easier and to not moan as it could be so much worse) and it came from people I once called friends. Finally I mentioned that it is views like this that prevent chronically sick people from telling life like it really is, prevent them from reaching out for help and support when they need it. 

It turns out this simple post restored my faith in humanity. Thank you to each and every person that left such nice comments, that told me I had opened their eyes, that they didn’t realise what my life was like behind closed doors, that told me I was doing brilliantly at raising awareness and not to stop. Thank you to the friend that told me I had given her family hope when her husband got CFS, that through talking to me she knew how to explain and manage the condition. Thank you to each and every one of you. It was so kind and so unexpected. I will complete the 30 day challenge and see how I go from there, but they made be realise it was worth all the blood, sweat and thousands upon thousands of tears I have put into this. Thank you. These diseases sure do help you to find out who your friends are. 

And that leads me onto day 15 of the challenge: 

What would you say to someone newly diagnosed with this illness? 

I’m going to bullet point this, because I’m tired and today has screwed me physically, mentally and emotionally. 

  • You find out who your friends are. People always say this about chronic illness but it seems they say it because it is true. That has become very apparent to me today. Those friends that stick around, that want to know more, that ask how they can help, those friends will never leave you. Trust those friends, open up to them and accept their offers of help. It’s hard but do it, trust me just do it. 
  • Relationships with chronic illness are HARD. But if you have someone that will stick by you, through think and thin know that you have nailed the relationship game. It’ll be hard, you’ll feel like a burden, they will be tired and stressed but love will get you through. If you can get through chronic illness together you can take on the world. 
  • Family. Having a family, raising a family is more than possible. You learn to manage your life and your condition, it’s hard, it’s always hard but family is the thing that gets you through. Not just children or significant others, but parents, brothers, sisters, aunts, uncles, cousins, everyone. Family can get you through the darkest of times. 
  • Medical stuff. There’s no reason and no cure at the moment. Speak out, help to raise money for research. Make a list of doctors that take you seriously and are ready to work with you, stick with the doctors on the list. Take help from OT’s and Social Care, accept the equipment, forget the stigma, it gives you freedom and independence.

Although there is likely more I am too tired today to think of more. So if you have a chronic illness please comment below with your advice to the newly diagnosed spoonies of the world. 

I will end on one more peice of advice. 

  • It’s going to suck but look for the positives, for the things to be thankful for, cling on to them and let them get you through. Because even in the darkest of days there is always a little ray of light, something to be thankful for, you just have to look for it. 

My Biggist Little Thing – Chronic Illness Challenge Day 10. 

What little things make your life easier? 

Wow. There are so many little things that I never thought could make such a big difference in my ability to cope with my chronic collection. Things that I didn’t used to have that I could no longer imagine getting by without, people I did not know would become so essential to my day to day life. So the little things that help me can be divided into three sections, equipment, technology and people. 

Firstly equipment. Since I’ve been ill I have realised how much equipment is there is out there that is made to help people with chronic illnesses. I also had no idea just how helpful most of it could be. 

There’s mobility equipment, firstly my crutches, they were the first things to give me my mobility back, when my legs were weak before my arms went. Then there was my wheelchair that allowed me to have a life when I would otherwise have been completely housebound. Things I used to look at as signs of failure soon morphed into objects of freedom and independence. Finally there is my fold up walking stick that is in my bag wherever I go, once again this was once stuck in my mind as “something for old people” but it’s bright, funky and hidden when I’m not using it. 

There’s equipment in my home that helps me, but, sadly, because I am often ashamed of having to use it, I mostly hide it when people come round. But, because I promised to be honest, and however embarrassed I am, however difficult I find this I AM going to be honest, I AM going to list the equipment I have and use and I am *deep breath* going to put aside my shame (unwarranted though it may be) and hope I raise some awareness about how debilitating my chronic collection can be. 

Let’s start with the easier stuff. I have special light weight cuterly and special grips to help me hold them. This allows me to feed myself more easily without as much exhaustion and pain. I have a “hotcup kettle” that despenses small amounts of hot water at a time, along with many cups with lids and thermo lining this allows me to make tea (with assistance) and drink it when it is not stone cold. I have a perch in my kitchen that allows me (although rarely now as it still involves some level of weight baring on my legs) to do bits and bobs in my kitchen when I am well enough, without having to stand. 

I have a hand rail going up the stairs (I don’t have funds for a stair lift) although I mostly go up and down stairs on my butt. I also have grab rails in the shower bath to help me to sit up from laying down, there’s a second to allow me to stand and get in and out but that’s been beyond my use for a while now. 

I have a bath lift, the one I have now is amazing, it is basically a giant bath pillow. It begins as flat seat, you pump it up and it becomes a solid seat that you can then sit on and turn to put your legs in the bath. You slowly deflate it and you can lay back in the bath, you can completely deflate it too, so you can be as submerged as a “normal” person. When you want to get out you simply reinflate it and it slowly brings you back into a sitting position and allows you to turn to get out of the bath. You can do it as slowly and quickly as you like to allow adjustment time for things like dizziness and crazy heart rates. I LOVE my bath lift (although it is one of the things I have a tendency to hide) because it means I can get myself in and out of the bath. Okay so, I still need help physically washing and Chris still has to be in the room because I have a nasty habit of passing out in warm environments, but I can do the in and out routine by myself! Also in the bathroom I have a toilet frame, this is something that I would love to hide from the world but also something I cannot as I depend upon it to get onto and off of the toilet *bleugh*. Not a peice of equipment I am proud to have to own but it DOES make a massive difference to my day to day life, it was also incredibly useful for Wildchild to climb on and off the toilet! 

Ok, so my bedroom. Let’s start with the least embarrassing bits of equipment. I have a special mattress that helps to take the pressure off of my joints, it’s like sleeping on a cloud and doesn’t look any different from a normal mattress (bonus). I also have a bed guard, which yes, is there to prevent me from falling out of bed and help me to get in and out of bed, but it’s also pretty funky as it has compartments for magazines and such (or iPads, kindles and phones) it also worked a treat when Wildchild would sleep with us! I have a nebuliser that is constantly on my bedside table for when my peak flow drops enough, which tends to happen in the middle of the night. In my wardrobe is a filing cabinet (what? That’s not where you keep yours?) it’s small for a filing cabinet but the only lockable place I could keep my medication and sharps bin (which was vital when Wildchild was younger). Okay… *deep breath*….. *REALLY deep breath* this is the one that I am, full blown ASHAMED of having, the one I never wanted and I would do anything to not require but, nonetheless I have to admit it is useful, probably more for Chris which is the sole reason I agreed to one when it was offered to me. I, at the grand age of 32, have, a, commode *mega cringe*. I hate it and I mean I HATE it. But, and here is the big thing, it is useful. Before I had it Chris was working full time, caring for me when he wasn’t at work, already getting up at 5am with Wildchild and then, because of my pride, having to help/carry me to the toilet multiple times a night (on top of getting me meds and food to allow me to take meds when needed). My pride was utterly selfish and, as the sick one, I should be doing my utmost to relieve Chris of any extra pressure he is put under by being my carer. That said, if I am well enough to get myself to the toilet (by any means necessary, up to and including crawling or bum-shuffling) I will do that before I consider using “that thing”. But I am trying to make life easier for him, my pride has taken the hit and now I’ve accepted it and am being honest about having one and (occasionally using it) so that’s a double whammy to the silence and shame that these diseases bring with them *take that chronic illness*. I’m also in the process of having call line installed in my house through a referral to the “falls prevention team” it seems full on hitting the deck 3-4 times a week is a little more falling than is ideal, but I’m sure that’s a story for another day. 

Right *finishes cringing* onto technology. Ah, I LOVE technology, the advances in it even since I got sick have allowed me to have so much more of a life now that when I was last this ill, it’s only been a decade. 

My phone. I don’t know what I would do without it, it is, quite literally my lifeline to the world. When you spend so much time housebound when bigger screens are too hard to deal with and sitting up is a struggle in itself, phones. It allows me access to the world outside my home, it provides me with support, amazing friendships and allows me to work when there is no way I could do so otherwise. I used to read all of the time, and now I can’t, my phone is my link to my love of books. Through websites like “listening books” I have access to audiobooks so I can still live in fictional worlds without having to physically read (btw if you have a chronic, long term health condition that prevents you from reading and are in the UK check out the site as it allows you access to almost unlimited audiobooks for £20 a year). Come to think of it the only thing my phone is rarely used for is making phone calls! This blog would not be possible without my phone as sitting on a computer to write it is beyond me. 

My iPad, this is my saving grace with my daughter, well using another technological aid it is anyway. Thanks to chrome cast I can have precious time in my bed with Wildchild, snuggling, chatting and watching little bits of tv together, cast onto the TV in my room through my iPad (or the old one she has gifted from my mum). When I’m not strong enough Wildchild can even operate it! We also learn about things together, googling and youtubing things we want to learn about. Speaking of learning, I have learnt to sew, crochet and even hula hoop (in my better days) through you tube, through my iPad. 

That’s enough about technology, because, trust me I could go on forever about that. So into people, I didn’t realise that I could allow myself to depend upon people as much as I do, or how helpful it would be to let myself. Between Chris and my dad I have 24/7 care. My mum helps with Wildchild and so does my sister when she’s down (she lives an hour away now, if you’re reading this move home already!). Friends that I can talk to on the internet when I’m having a rough time, any time of the day or night. My best friend who I know, despite her own chronic collection and other problems she faces would drop anything at a moments notice if I needed her. The mum friends at Wildchilds school who help me when I can’t get to or from school during school runs. The teachers at her school that are so supportive. My church family that look after me, watch over me and pray for me. Even the medical teams, physio, chiro, gps, social care, falls prevention, my awesome pharmacist, they have all made my life that little bit easier. 

And finally, my biggest little thing, the one that, solely, on her owns gives me the strength, love and will to live I need everyday. She makes me laugh, smile and gives THE BEST cuddles ever. My Wildchild, my love, my light, my little reason. 

The photo below is from the #millionsmissing protest. About how I am missing from society, from life, I’m missing being a person, I’m missing being the wife I want to be, the mother I want to be (hence Wildchild walking into the distance). But thanks to Wildchild I am not missing being a mother, she’s my miracle and my entire world! And, most definitely my very biggest “little thing”.

It’s All About the Money – Chronic Illness Challenge Day 9

Have you tried any alternative therapies? Did they work?

Although I have most definitely got to the point of “I’ll try anything” on my journey to treat my chronic collection there are issues. I would, most definitely try anything to help my symptoms and treat or cure my conditions. However there is the small aspect of money. Most alternative therapies cost money. Being sick and disabled does not pay well (read at all). So although these treatments and therapies may well help I simply cannot afford to try them.

Being lucky enough to live in the U.K. I am treated by the NHS, meaning my basic healthcare is free. Some would argue (including myself) that there are many more options available to you if you can afford private healthcare. I will make this clear, I am a MASSIVE supporter of the NHS, I regularly protest against people wishing to destroy and dismantle it. I used to work for them and therefore know, firsthand, the restrictions in place within the system, due to funding and red tape. I get it, professionals cannot offer on the NHS all the therapies, medications, scans, treatments, trails etc that they might wish to. The private healthcare system has almost no such restrictions, people must qualify to receive the care but if they can pay it will be available to them.

If it is not available on the NHS and you don’t have the money to pay for it you are unable to receive the treatment/therapy/medication. Regardless of whether or not it will help you. Which is sad really and not (in my mind) the intention behind the creation of the NHS. It was put in place to help the nation to be healthier, not only those whom lived in a certain area or had the cash to pay.

So although I am willing to try anything to ease my symptoms I am simply unable to, even non-medical, altnerative therapies. I get some monetary benefits for being disabled (not out of work benefits but ones that are there to aid disabled people with the higher cost of living being disabled brings). But all of that is put towards rent (because the rent is higher in the types of building where I can live), heating and hot water (cold makes my pain worse and I have warm baths every night to aid pain relief), food (I try and avoid processed food where possible and have a diet high in fresh fruit and vegetables) and various vitamins and minerals that are not available on the NHS (ones that aid my chronic collections, some that help my less-than-stellar immune system and others that combat side effects from meds). So yeah, that’s all of my PIP gone and more besides. Paying for alternative therapies that “might” help, with little income, no disposable income and a daughter to support, isn’t a smart decision. We live pay-cheque to pay-cheque, normally just about staying above the zero level in our bank accounts (and, before it’s even mentioned, Chris works full time and I work part time, from home).

Having said all that there is one “alternative therapy” that I use on a regular basis. I’ve put “alternative therapy” in quotations like that because it IS considered an alternative therapy in the UK but isn’t in the USA. That should say it all to be honest. Anyway. About a year ago my dad did his back in painting a fence in the garden (bare with me here, this is going somewhere I promise) he eventually went to a chiropractor in Maldon (Maldon Chriropractic look them up they rock) and a lovely man called Dave fixed him. My dad could afford to pay for it, anyway, when he started to improve and his sessions lessoned he asked Dave if he would be able to help me, Dave said he would do his best.

Now my dad isn’t loaded but he has just enough money to put one of us through treatment at a time. He came home, told me I was going to see Dave, that he was paying and that Dave would help me (and to shut up and do as I’m told). Now, I’ve told you before I HATE taking help and I also really hate having to rely on someone else in a financial sense, but dad pointed out I would “try anything” if I could afford it, so stick to my guns and do it.

Best decision I’ve ever made. My first session with Dave was very good and very long, but that tends to happen as my collection is very interesting. He said he could help me, that by dealing with one problem it would make the others easier to cope with and give my body a bit of breathing room, as it were. It made sense so I thought “why not”. The first thing he did was X-ray my entire back and neck. Something that, somehow, no one had ever done, despite complaining of back, neck, chest and head pain for years. He found that my neck curves the wrong way (explaining my cervicogenic headaches), my back curves slightly in two places (one level with my sternum deforming my ribs and the second at the base of my spine, explaining the chest pain and piriformis syndrome) and that one of my discs has slipped anteriorly.

I started on a intentsive course immediately, going in 3 times a week for the first 6 weeks. Gradullay decreasing over time. And yes it works. I was SO convinced that it wouldn’t so there is nothing psychosomatic involved. He can tell when I’ve been spending more time bed/wheelchair bound than usual without me speaking. Even little things like when I have had a slight asthma flare and my breathing has been a little bit harder than usual, he can both help them and know about them without me saying a word. I’m not pain free, I’m not cured, but I am in significantly less pain and my body is able to cope a bit better with other symptoms because it’s not having to focus so much on others. I’ve also had the winter with the least amount of GP visits and infections since I was officially diagnosed. I’ve had to wear my face mask a lot less than usual this winter to because my immune system has been functioning above average for me. So bonus!

I’m now normally down to three weekly appointments, tomorrow I have an appointment actually but it’s only been two weeks since the last as I had a virus that landed me in bed for a fortnight. It tightened stuff up and reversed some of the previous work that Dave had done, but that’s the brilliant thing because he is both flexible and honest, adapting to his patients needs.

So yes, I am willing to try anything but sadly the cost of such therapies prevents me from doing so. The one “alternative therapy” I have been able to access thanks to my dad, has most definitely helped. Maybe one day that will change. Maybe the protesting myself and others whom care deeply about the NHS will have some impact and more funding will increase the options, treatments, medications and therapies available to people like me, who are otherwise left to suffer.