Spoonie Friendly Exercise an Introduction

This post has taken me the best of 3 years to write. Mainly because I have personally found exercise such a triggering (and I mean this in real mental and physical health terms) topic and I understand if as a spoonie you do too.

This week we’ve been chatting a lot about exercise over on Instagram and I’ve saved the highlights of these for you to read. In summary as a community we face barriers to exercise such as:

  • Unable to do the exercises in classes and videos etc as they are aimed at a mainstream audience and don’t understand the complexities of disability
  • Places like gyms and swimming pools are inaccessible and expensive
  • We have had bad experiences
  • Exercise can cause more pain and fatigue
  • We compare ourselves to others and feel inadequate and what’s the pioint

On the plus size we also feel a sense of joy and accomplishment when were are able to exercise. It can relieve pain and build strength. So the key to it really seems to be that:

  • exercise doesn’t look the same for everyone
  • some is better than none
  • trying lots of things to find the right fit is important
  • reaching out and finding exercise that is tailored for disability is vital
  • don’t exercise for anyone but yourself and your own reasons

So let’s get stuck in and see what I’ve found along the way. Here’s the mandatory (cue eye-rolling) bit that says I’m NOT an exercise specialist, doctor or trained professional. Here’s what is important:

  • Do not cause yourself harm by trying something without consulting your doctor or a professional.
  • What works for me may not work for you at all.
  • Don’t compare yourself to what I can and can’t do. We all have different and beautiful bodies who can do different things. Love that, embrace it and move in your own way.
  • Remember a little is often more. if its 5 minutes of movement that celebrates your body then thats awesome.

For those who struggle with lots of text here’s a quick menu to skip to the sections.

Exercise Referral Scheme – UK incentive to get active
Exercise and the instructor
Beginner exercises
Moving up to intermediate
More advanced levels of exercise

My exercise story

Although I’ve always struggled with energy and exercise I remember a time when my mobility and energy started getting worse, pilling on the pounds (learning this is ok and unlearning my own fatfobia) as I took more medications and gradually moved less. Who really wants to exercise when it hurts and you feel like you have the flu? Exercise became something for me that was painful, triggered fatigue and caused injury. I’ve never been super into sport, probably as I am hyper mobile and prone to injury. I have always loved swimming, cycling, walking and yoga. Not being able to do these things takes its toll on your physical and mental health.

To add to this I kept seeing posts such as “go hard or go home’ and ‘there’s always someone busier than you in the gym’. Yes these statements are designed to guilt you and yes they are absolutely loaded with ableism. They may motivate a certain type of person but to others, like myself, they put me completely off and made me feel awful about myself.

Then one day I mentioned this to a friend when I bumped into him whilst at the gym. I was there for Water Therapy, which I have done as part of the exercise referral scheme for the past 7 years. He said to me ‘I see you here all the time though?’ and I replied that I only did water therapy and supervised gym sessions and they were very, very low key. His reply was that it didn’t matter what I did compared to anyone else and my going hard or going home was turning up.

I’m not going to pretend the comparison went away, but I know that by being there and doing what I can I am doing something. I believe that any of us, what ever our disability or restriction can do the same too. I’m not pretending the accessibility and financial barriers are nit there. But if we challenge them and ask for more then we are able to ‘exercise too’. If you can find your own way to move and make your body stronger in a way that works for you that’s exercise. And that’s why I’ve been inspired to write these series of posts as my experience and guide to exercise as a spoonie.

I am going to repeat here that I am not a professional in terms of exercise or medical training. As always you should check with your health professionals if you are in doubt. What I can offer is an honest account of what I have found helpful and I’m am never ever going to say any of this will make you better or cure chronic illness. I do believe we are happier and healthier when able to take part in exercise in what ever shape that looks like for you. So here is what’s helped me.

Exercise referral scheme

As I mentioned above I started this scheme before anything else. Its a 12 week guided programme working with a specialist(s) to get moving again. There is a small fee to join which is no where near the price of memebrship or classes. In fact by paying there is motivation to turn up. It’s offered by the Nhs to qualifying patients.

Exercise Referral is available for a range of medical conditions such as; Coronary Heart Disease, Stroke, Respiratory Disease, Cancer, Diabetes, Obesity, Muscular/Skeletal problems and Mental Health issues amongst others. You may also be recovering from an illness/injury or need exercise to address risk factors associated with medical conditions. We are able to offer specialist, qualified instructors for: Cardiac Rehabilitation, Cancer and Musculoskeletal conditions. The scheme is aimed at those who are currently physically inactive.

(To those in other countries, I can suggest talking to your GP to ask what is available where you are.)

I have to be honest I was really put off by the first gym I joined. They didn’t listen and gave conflicting advice. (They told me I could get in the pool with RA but not with Lupus. I asked why and they said because of risk due to medication like Methotrexate, which is used to treat both. I checked with my doctors and this is rubbish!) But determined I started again with a different gym and loved it.

Exercise and the instructor

The instructors at my new gym took the time to get to know me and my conditions, they even phoned my physio to ask what was good and bad for me. They never push but just support. I do Water Therapy ( not the same as hydrotherapy but similar) which is working to build strength and flexibility in the pool which minimises pain and pressure on the joints. I also do an exercise class and supervised gym sessions. If you find the right gym then this programme is such a good starting point. Don’t be afraid to say if the gym or instructor isn’t working for you. They have to get it and be trained in what disability, illness or impairment looks like and works. They will also provide specialist equipment such as different stairs or a lift to get into the pool. For me getting the right support was the key to building my strength and confidence.

Beginner Exercises

Although you may not be jumping into cardio and aerobics or Hiit (shudder), you can still get moving in a variety of ways. Just small movements , whether its strength exercises, yoga, or walking get us moving. And a little movement is better than none. In this section I’ve provided a number of ways to try to ease your way in to movement and find what works for you.

Active 10 we’ve all heard of Couch to 5k over the past couple of years and probably know of at leastt 5 people doing it. With joint pain and fatigue the idea of running makes my blood run cold. The only way I am running is away from doing any running at all! I was delighted to find out that the Nhs also has a lesser known app called Active 10. This is an app that is entirely based on walking and building up active minutes (brisk for you walking) each day. The key is to start small and gradually increase and the goal is 10 minutes a day. It is available to download for free here. PROS: Its free and simple CONS: it relies on walking and remembering to take your phone!

Stretching and Strength is really important for our flexibility and staying mobile. This supportive workout programme by Katy (Invisible I) is great because Katy understands fully how challenging basic movements can be. The video below is her sharing what she learned on the 5 week pain management programme. She is super gentle and guides you through a series of exercises to create your own tailor made exercise programme. I like it because there is no one to compare to and the emphasis is on some is better than none. PROS: Its free and you don’t have to get dressed or leave your home CONS: No one is checking you are doing the work correctly and it relies on you motivating yourself

Building Up Strength Gently: At the beginning of lockdown I went into shielding and was unable to go to the pool or gym. Also being unable to leave the flat meant that my already sedentary lifestyle was becoming more limited. I was sent a list of exercise resources by the shielding service and began with some basic workouts. I liked the video below which from The British Heart Foundation. It’s a nice easy full routine to follow from beginning to end. It gives you something to repeat and on a regular basis to build up strength. It also gives variations for different abilities. PROS: it seated or uses a chair to lean on. They also provide different levels to make it easier or harder. It’s also free. CONS: some relies on standing.

Yoga For Bed Days: I can’t tell you how happy I am that there is a yoga video made for when you can’t get out of bed. I’m not suggesting this is for when you are absolutely broken. But its something to pull back to when you want to move a little but can’t muster the energy to get your mat out. Or if you can get your mat out its super gentle. Even if this feels like a super easy routine for you have it in your arsenal to pull back to when you need it. For me a fluctuate so much with flare ups and injuries I find myself starting back at the beginning of this process all the time. And doesn’t worry if you still find parts of this hard, legs straight in the air rarely happens for me. PROS: super easy and shows how little movement can go a long way. CONS: I wish she’d been in an actual bed!

Moving up to intermediate

Getting your heart rate up. Because I wasn’t able to leave my flat and walk in lockdown I was very aware hat I wasn’t increasing my heart rate. I find cardio hard because of POTs and circulation but I do feel better when I do it. I’m not someone who gets an endorphin rush and prefer slow movements. But I thought I’d give it a go, everyone else was doing Joe Wicks and I knew that was a no go. So I hunted for some spoonie friendly exercises. I love Cocolime Fitness because she is knowledgable but real. She challenges me but also gets out of breath and wobbles. The important thing is to start really small and I mean literally 5 to 10 minute workouts like below. PROS: it’s free on YouTube. The exercise are low impact on the joints. The raise your heart rate by you moving the largest muscles in your body. CONS: No one is checking you are doing it right. It is easy to pick a too difficult level. I’ve done it and nearly committed and passed out then been unable to move for days!

Yoga can also be done in levels too. If you haven’t heard of Yoga With Adriene then where have you been?! I love that she has yoga for EVERYTHING. I love the yoga for Chronic Pain and Yoga for Migraine routines as they not only are about moving but they are designed to help as relief too. She has so many videos on YouTube and once you sign in you can save all your fave accounts and videos to come back to. PROS: there are so many free videos of all different levels to choose from. Oh and Benji the dog is always a joy. CONS: No one is checking what you are doing. It is easy to pick something too difficult or compare to what others are doing. For this reason I would stay away from things like the 30 day plans.

Zoom Yoga. The other yoga classes I have been doing during lockdown and continuing are online classes live on zoom. You pay per class and join the zoom (video call) session in which the teacher teaches live. You need to have space and your own equipment. Its great if you were previously attending classes and now can’t, get in contact with your teacher as many have moved to teaching in this way alongside their in person classes. Isn’t it amazing just how accessible things have suddenly become?! If you don’t know a teacher ask your friends and family as they may know someone. Try a beginner class like relaxation yoga first. PROS: you don’t have to leave your hime. The intructor can see you and make suggestions and vary the skill level. CONS: it costs about £5 to £10per session (when you do 3 sessions per week this can mount up) and you need to buy your own equipment.

More advanced levels of exercise

Increase the length of your routines. I began to slowly increase how long I was exercising for. Over three months I managed to do cardio based exercises for 30 minutes! But this was slow going and took a long while. Don’t be tempted to make big leaps, there’s nothing worse than overdoing it and feeling defeated, in pain or unable to do it. The truth is you can do it, rest, recover and drop to a place you can do it. Again I love Cocolime Fitness for her varied and fun routines. The ones with dance are a firm fave of mine. She does also offer paid programmes and I have considered them as I love her approach. PROS: varied, fun and different levels and duration. CONS: only a limited amount of free content. Easy to overdo it.

Seasted Workouts. Chair Workouts is a great channel for those who find standing and working out not an option or difficult or painful. My fave workout is this one. It does involve moving the legs so be aware of this. It shows different levels and I like the instructor as he’s real and not patronising. Its hard though and the arms above the head kills me! PROS: a challenge but easy on the joints CONS: lots above the head which makes me dizzy.

Cardio in a shorter time frame: The British Heart Foundation have this beginners work out to get your heart pumping. Though for me the length of the video was deceptive as some of the moves like jumping jacks are hard on the joints. Its a good way to get into basic aerobics but I think requires a certain level of able bodied fitness hence why I have put it in the harder section. PROS: a shorter routine that really gets your heart going CONS: more challenging than it appears.

I hope this has in some way made you feel seen. That you know that sick bodies, disabled bodies, fat bodies and tired bodies can move. But that is unique to you and on your terms. You can ‘exercise’ if you are in control. Remember the word exercise should mean what yo want it to. It should look like what works for you. It should be enjoyable and most importantly only be for you. Let me know in the comments what you have found that helpful and let’s together build a database of exercise for everyone to dip in and out of.

Spoonie Solutions

Hands up who has #spoonie problems? Me too, I probably whine about them a lot. You’ll know this if you follow my ig stories! So what’s this #spooniesolutions all about? Well it’s turning the hashtag #spoonieproblems on it’s head. Before you cry in protest its not because the problems are not valid, quite the opposite in fact. They matter so much, and need to be highlighted. #spooniesolutions is all about identifying the problems and shouting about them. Then I want to attempt to discover some answers.

This all came about after a combination of discussions, and a personal review of my blog and Instagram. I had a big appointment recently in which I found that, as expected, I have an area of hyperperfusion in my brain. In the appointment I took it in my stride, but as the results sank in I felt very upset. Part of me wanted to jump for joy that I have a positive (as in something showing up not a feel good) result, and part of me was scared and in shock. It explains a lot including migraine, and serious mental health issues, confusion and fatigue. But it broke my heart to think that it is active in the blood vessels in my brain. For my own sanity I had to recognise my upset (spoonie problem) but find a way to deal with it (spoonie solution). For the first week I cried and it still makes me cry now. But I am getting there.

I’m in a position now in which I can reflect on how I’ve survived through the past few years. Yes that’s dramatic but it has been survival. I can hand on heart say that it’s been through living life slowly and taking time to nurture myself by being creative and living a more simple life. I want the solutions to #spoonieproblems to reflect this but also offer a range of approaches that I hope will be useful to me and anyone else that is out there and reading. They’ll include practical advice, campaigning for change, and most importantly opening up the issue for discussion.

As a veteran spoonie I feel qualified to address the issues from an insider’s perspective. But to ensure that the solutions given are thorough and actually useful I will be consulting with other spoonies via the comments here, Instagram and in real life. I will also include resources from medical practitioners, other websites (such as The Mighty), apps (such as HealthUnlocked) and relevant organisations.

I have a few solution guides planned including travel and holidays (vacations), everyday travel, work and benefits, and hobbies. All of these will include parts of my personal story and anecdotes. But I will approach how to deal with them by being creative and living slow.

Please don’t be shy, I’d love to help your share your story and looked at spoonie problems together. Let me know in the comments, via social media or email.

Look forward to hearing from you…

Diagnosis Murder Part 1

Well I’ve attempted to write this a few times and failed. In the past I’ve been given labels and written about them. And in reality my diagnosis is still fluid and ongoing.

It’s mostly described as a list of symptoms with a few anecdotes/ short stories thrown in for goo measure. I’ll start all the way back in the beginning… take a deep breath and grab a comfy seat, it’s a long one.

The early days

When I was younger I used to have bouts of severe stomach aches, and vomiting. I remember my first one so clearly. As a birthday treat my mum and dad had taken me to London to see ‘Joseph and His Amazing Technicolour Dreamcoat’. Any 80s child, and closet Jason Donavon fan, will remember the song that was at number one for like forever (sorry if it’s now in your head t… any dream will do…). We were too late to see Jason but starring in it was Philip Schofield of the broom cupboard fame. If you’re too young to get the references then you really missed out. I vaguely remember the show and the t-shirt I got a treasured (until my sister pinched it and vommed all over it whilst travel sick). What really sticks out though is the insane stomach ache I had after the show. We had gone to get pizza and I spent the whole time in the toilet unable to hold anything down.

And so it continued from that point and happened anywhere and everywhere. Always coming on super fast and the most painful thing ever. All the attacks were attributed to an almost ten year grumbling appendix. In reality I think they were Abdominal Migrainesthat were mentioned at the time but not really explored. This was the appearance of my first condition, Chronic Migraine.

Head and occasional abdominal migraines are with me to this day. And no they are not just headaches but they are completely dibilitating and so painful you wonder whether you can cope (if someone gave you a shotgun you’d probably pull the trigger). I have ended up in hospital with mine and take meds daily to stop them. In the last 3 months I have had 5 major attacks each lasting from 7 to 24 hours. Sometimes they cluster and sometimes they don’t. They have a significant affect on my life as are so sudden and viscous. They stop me functioning completely. I’ve tried multiple medications including Propranolol (worked a little bit) and Pizotifen (worked a lot but caused massive weight gain) and my current medication Sodium Valproate ( I have it under review). I also find that sumatriptan is the best medication to use when they start. My latest one has lasted 6 days and although I’ve managed to carry on functioning throughout and stave off the big blow out. It’s been painful I’ve lost my appetite and sleep.

Teens

At 17 I had an enormous attack of stomach pain and migraine. I was supposed to be painting the set of a play and ended up rolling around on the floor cloth in agony, I saw the school nurse and begged to just go home. Looking back I was so used to self managing these attacks that I was convincing to others that I was better than I was. (I still do this now, so if you ever do see me asking for an ambulance, I really need it.) On this occasion the School Nurse must have got me a cab home or something. All I remember was the next couple of days wanting to die from the pain. At some point a GP came out to me and when I wouldn’t let her touch me because of the pain she told me I was being a silly little girl. She gave me pethidine and anti sickness and told me I’d sleep for ages then be ok. I woke up twenty minutes after she left and was back in exactly same pain and vomiting. Eventually I was only bringing up pure black liquid (sorry) and had a circular bruise on my forehead where I’d passed out on a bucket and was still being sick. Eventually another GP came and said it was classic appendicitis. I went off to hospital and had my appendix out.

As a side note, the not being believed by doctors, the self managing of the attacks, misdiagnoses. Plus falling behind at school and teachers thinking I didn’t care has had a huge affect on my mental health and self esteem. In particular feeling as though I had failed and feeling guilt for being ill, or though I was using it as an excuse, is still with me now and it hurts to write it. I remember one of the drama teachers, who was involved in the play I mentioned above, pulling me aside and asking me if I should be doing drama! All because I’d missed the play whilst in hospital and hadn’t finished the floor cloth I was writhing on. Despite getting an ‘a’ in that course, completing a degree, and running a successful theatre company for ten years, I still ask myself the same question and it cuts really deep.

After my appendectomy (still don’t know if it was appendicitis or migraine) at 17 I kept getting flu like symptoms. I had constant fatigue and joint pains. It went on for weeks and weeks, then into months. At the time it was attributed to a glandular fever like virus that my body couldn’t fight off. I dropped back a year in sixth form and began the pattern of doing things at my pace. I couldn’t focus in lessons and would fall asleep on my desk despite fighting it. Interestingly at a similar time my sister was diagnosed with Juvenille Arthritus, and what I didn’t know till later was my mum was diagnosed with Ankylosing Spondylitis. I think this episode was either my autoimmune trigger or the first signs of activity. Multiple blood tests at the time showed positive ANA and white blood cell activity but it was never explored further.

Also from about 15 years old I began to struggle with mental health. At this time it was suggested I had Anxiety and Depression. By the time I went to University at 19 this was really affecting my life and I asked for counselling etc from my GP. By the time I was in my 4th year of university I was having an extremely difficult time personally, with my degree and at home. All of these contributed to a series of severe panic attacks. These were medicated and I just got on with it.

University

Fast forward a couple of years and I wasn’t coping physically at all. Firstly I constantly had the flu and couldn’t function. I worked really hard and just found ways of coping with feeling so ill. I went to the doctors and was told I was ‘unlucky’ to have had flu nearly every month. This was the biggest insult and I just couldn’t cope. I couldn’t get a full time job but built up my self employed work. This meant I was self managing whatever was going on in my body. I could work around the illness by ploughing on with everything I had when in a good patch and hiding when I couldn’t. This managed everything on the surface but in reality I was chasing my own tail constantly. Friends and others constantly commented on how often I was ill, other less kind comments urged me to just suck it up and stop moaning. I remember having conversations with people saying I think I’m going mad but something in my body is really wrong. I still felt like a fraud and the burden of guilt.

In 2005 I began to get severe chest pains. They were so bad I couldn’t use my arms or breathe. The pain was unbearable. My first reaction was that there was something wrong with my heart so I went to my GP. They thought it was either muscular or even anxiety and sent me away with pain killers. But it kept happening in cycles and I could feel the attacks coming. I saw multiple physios who mostly made it worse through their exercises. Eventually I saw a brilliant physio who wrote back to my doctor. She had seen me for a long time and recognised a number of symptoms pointing to something more than a mechanical problem. My trigger points were wide spread and with the other symptoms she thought that maybe it was fibromyalgia. She wrote a long and thorough report for my GP that took into all my symptoms such as fatigue, confusion, dispraxia, flu like symtoms, migraine etc. I returned to my GP who called in a senior partner and they decided together that this was something more. For the very first time I was being listened to and this GP stayed with me through a lot of the next bits.

Adulting

So I finally got referred to a rheumatologist and felt like everything would finally into place. I was finally being listened to and it was recognised that something was wrong. Within seconds of the rheumatologist walking into the room I was crushed. Before even meeting me or talking to me he looked at one set of bloods and announced ‘it’s not lupus, it’s not RA’. Only then did he examine me or ask any questions. But he never really looked or listened. He avoided eye contact with me, choosing instead to stare into his computer screen. I can honestly say I’ve never met a colder or more inhuman person in my life. By the time he abruptly said ‘you can go now’ I was more confused than ever and in tears. I began to walk out as the nurse barked ‘go get your bloods’. ‘What bloods?’ I said as I broke down completely. Then she explained everything the doctor should have done, and that he was a good doctor despite his bedside manner. I don’t think he was a good doctor and triggered lots of mental health issues. Later I got a mystery letter in the post summoning me to a full upper body MRI and physio. Apparently all ordered by the rheumatologist, I didn’t have a clue what was going on. Nor did the physio it seems. I was dumped in a cubicle with a trainee who took one look at me and said ‘I can’t treat you you need someone more senior’. They’d be in contact,  they weren’t.

The next letter I got was summoning me to hydrotherapy. Amazing I thought something practical I could do to help myself. But this was not the case either. The therapists didn’t know why I was there and asked which physio I’d seen, I never had had a proper appointment with any. So they offered me sessions which I tried. The result was cancelling after three seasons as I was in so much pain I couldn’t breathe, move or sleep. My GP wrote a letter of complaint, I was so let down and felt toutured by the treatement both physically and mentally. Again I thought I was going mad, but this time my GP was behind me and persisted. I finally had someone fighting my corner.

So letters of complaint were written and I chose my next rheumatologist at a different hospital. I decided to give it another go and this time couldn’t have been more different. He listened carefully to my history and family history. He said he thought something auto immune like was going on. The first thing he diagnosed me with, however, was Joint Hypermobility Syndrome. This explained a lot of the chest pains I’d been having, as well as other symptoms in most people hypermobility isn’t a problem but with overlapping symptoms it was reeking havoc with my joints, connective tissue and pain. I was finally referred to a specialist physio who confirmed all the previous physio I had received was more damaging than good. I still see her now and she is part of my ‘magic team’ of experts. Without all the sessions I’ve had with her, including ultrasounds and acupuncture, I wouldn’t be able to move half as well as I can today.

To be continued…

Lets rest here for now because I’m tired physically from writing this and mentally from going through it all. I hope this begins to explain to others the extent of what’s going on. But mostly its been a hugely useful process for me to go through it all chronologically and to realise why some of my behaviours and blocks towards the system are there.

Next up in part two, my thirties…

Anxiety girl

Hello anxiety that is making angry, scared and unsociable. Where are you coming from? I know I’ve accidentally missed some important meds and some sleep. I’ve worked quite hard volunteering, and it’s been Christmas, the most anxiety ridden time of the year. But clearly I’m a bad person who can’t manage myself.

I’ve got constant butterflies and I’m trying to do all the things to tell the negative thoughts to go away. But the voice gets stronger and I hear people talking about me and criticising as though they are in the room. I ignore it and carry on but it just gets louder.

Yesterday I didn’t have any sleep because I missed my meds the night before. The meds are the only way I sleep and without them it’s a nightmare of pain and bad thoughts and being fidgety. This combined with a migraine knocked me for six. I tried to take control of it but when the migraine kicked in I crumbled. I ploughed on and went to the cinema with my friends. I fed the migraine with darkness, drugs and caffeine. Eventually the pain subsided and only the tension remained. I felt exhausted and emotional and anything slightly negative made me catastrophise. I couldn’t talk to anyone and was convinced I just pissed everyone off. The wall went up and I teetered with a meltdown.

So I pulled my socks up and went to the pharmacy to get some emergency meds. I did my research and the Nhs website said to try your doctor (they were shut), then your pharmacy, then a walk in centre. I walked to the pharmacy in pain from swollen joints to be met with a pharmacist shaking her head. Instantly she dismissed me and told me she couldn’t help. I pleaded with her that I’d read the Nhs website and this is what it told me to do. She suddenly changed her story and said she could do it if I rang 111 for an emergency script. ‘Are you sure?’ I replied, the Nhs advice didn’t say this at all. But facing another day of suicidal thoughts and crippling anxiety was too much so I complied. ‘If they don’t get you one I’ll do it’ she said ‘but you have to try first’.

Half an hour later I was still sat in Boots. My migraine was returning and I was sat on hold to 111. The bright strip lighting flickered and pounded. I started to feel ridiculously hot and sweat soaked my clothes. My pain meds we’re wearing off. My knees, fingers, ankles, hips and back were screaming. I know I was beginning to fall over fast.

So we begged the pharmacy for somewhere quiet to sit. A super nice pharmacy assistant found us a small room and we sat with the lights off and a fan on. They asked if I wanted to go to hospital. No way Jose was I going just for meds, and a migraine, joint pain and anxiety. I agreed I would if I started vomiting , shaking or fitting.’ I explained that the best thing would be the just get home to bed. The pharmacist then changed her tact and said she’d only accept the 111 prescription and I’d need to go elsewhere if I didn’t get it in time. The inconsistency was a nightmare for my anxiety and I’d been there before to get them so was on their system. I had a bundle of paperwork to prove I was on them but it was a case of ‘computer says no.’ It was as though she was making it as difficult as possible and I was just annoying them.

The assistant, however, was wonderful and we chatted about mental health and chronic illnesses. I began to calm down and eventually spoke to 111 who said they’d get a doctor on it. We then went round in circles for the next 2.5 hours. 111 kept asking if I wanted to go to hospital as my symptoms were alarming. I didn’t want to go, the best place for me was home if only someone would give me the meds I’d manage what I’d manage everyday. I felt like a dick that caused a drama as eventually they tried to get rid of me from the pharmacy and ask me to start the whole thing again with another pharmacy. I felt like a burden and just wanted my bed.

After 3 hours, countless phone calls and giving my details over and over the prescription still hadn’t arrived. The doctor I spoke to was convinced I lived in Norwich. Erm no I said I live in Canterbury and had done for 17 years. I think I went to Norwich once about 12 years ago, it was dark and wet and I didn’t even see the town. So he continued to ask if I was visiting Canterbury. No I explained again, I live here, just like I’d told the two advisers I spoke to. He writes the prescription. Turn forward an hour and the script hasn’t arrived and so I ring them back. Im now in a flap that the store shuts in 15 minutes and I’ve sat here for no reason doing everything everyone is telling me to. I’m trying really hard to sit and be patient despite it making my pain worse. Speaking to the East Kent (not Norfolk) team again I will us to be near the end of the whole sham. Then I was told my surgery was Aldington . Nope I said I’ve given you my details 3 times it’s Chartham, perhaps Aldington is in Norfolk, I suggested!?

Anyway 10 minutes before closing the fax arrived and I was given 6 tablets in a bag by a rude and unsympathetic pharmacist. Lack of pain control and anxiety through the roof I’m a mess, I’ve convinced myself she hates me, all the staff have been talking about me and I never should have said I went to the cinema to hide from the light. I’m not sure who was judging me more, them or myself?

By this point every look, word and action becomes overwhelming. I’d tried to plan a nice New Years Eve with a cocktail menu and funny description bit that means everyone who was coming was included. My friend had rejected it by saying she’d only drink her own cocktail on the list. I knew her reasons were ok, she wanted to stick with one drink to not get too hungover etc. But in this mindset it’s rejection. The menu, lovingly made by me for everyone, went straight in the bin as soon as I got in. I felt as though I’d tried to make a nice gesture then been told I was controlling or had bad taste/ ideas. I was ready to give up and go to sleep and sulk.

Somehow in that moment I managed to pull myself out of it. I put on my dress and lipstick and found some inner strength to have a good night. I rebuffed the negativity and overwhelming thoughts and for the most of it laughed and had a genuinely good time. It didn’t mean I wasn’t squashing the ‘they all hate you’ voice constantly, but as dramatic as it sounds I survived another New Years! I’m proud of myself despite being exhausted because I won a battle.

This morning I’ve woken up with the butterflies. It’s the alcohol I drank acting as a depressant, I tell myself. It’s because you’re ill and tired. I start to work a little on a project I volunteered on. I poured everything I had into it but I feel like a failure. Every time I try to make something happen on it there’s obstacles, politics and I do the wrong thing. Now I’m utterly terrified of the meeting tomorrow and that I’ll be belittled. I can hear the conversations that are going on behind my back and I feel sick with butterflies. But it’s just another day that I’ll get through somehow.

I am anxiety girl and I think I’ve realised at the moment I’m not at my most well. So bear with me, I’m fighting it and it will be ok but I may be a little fragile.

As an after thought. Just like the meme says above I have 99 problems and 86 are in my head. If I’m working with you at the moment, or have been around you it’s more likely my sensitivity and brain than anything that’s real. Chronic worrier here gets all sorts muddled. I’m also excellent at hiding it all, even from myself.

Dear Wolf

It has been a while since we had a little chat. Mostly because I’ve been busy as you know because when I am you sneak in to take a bite or two whilst I’m sleeping.

So it’s been a tough time since not working full-time, trying to manage illness and guilt, both playing off against each other. I have begun to realise that you are a black wolf, the wild cousin of the black dog. You affect me both physically and mentally. We are caught in a perpetual cycle of being ill and tired, or being kind to ourselves then being consumed by guilt for not working or not socialising etc.


My biggest frustration at the moment is when you take up residence inside my head. My head which was once sharp, intelligent, and on the ball. It ran a company, studied and managed large projects. It retained countless random facts and remembered everything. Just lately it’s not even been able to remember simple tasks. 

Most of the time this is amusing, like turning up to appointments a whole day early, despite writing the date out a million times over. Then returning the next day joking how efficient I am. I’ve even tried to lock the front door with the remote for my car and not understood why it wouldn’t work. I laughed at the time I organised an entire road trip to Scotland to visit friends and family. Somehow, despite writing everything down meticulously, I managed to book every visit and every hotel a week behind our actual trip. It was organised chaos on a spectacular level. Luckily, everyone saw the funny side and we managed to find hotels in which to stay. Most things work out eventually so I just laugh it off and rearrange.
Other times though, it is plain humiliating. Like not turning up to a huge schools day on a project I worked on for weeks because my brain just wouldn’t function. I cried when I didn’t see the results and felt like I let everyone down. The amount of tickets booked that have to be cancelled and re-booked because I cant match dates up. Keys permanently left in my front door (yes come rob me) because I forget or get confused. I get to work and they talk about my shift tomorrow and I smile because I had completely not seen that shift on the rota but luckily someone always reminds me (so far). Even as I type this on the train from London to Edinburgh, I redden at the fact the train tickets had to be cancelled and re-booked because, despite checking three times over, I booked entirely the wrong dates and days. Then the ticket collector arrives and I squirm because I cannot find the ticket I was holding just 3 minutes before. It’s humiliating and I can laugh most of the time, but as someone who was so good at life before I feel so stupid now.
The humiliation that has taken me sliding down every rung of the ladder and smashed my face on every step. I still try to see the funny side and always will. 
So Wolf, this week has been one of continuous humiliation, of which I’ll continue my frustrations in my next letter.
At the moment dear Wolfy, I ask that please can you leave my favourite organ – my brain – alone. I’ve always quite liked it and I need it most days…

Learning about Chronic Illness and Autoimmune Disease

About a week ago a book caught my eye: The Autoimmune Wellness Handbook by Mickey Trescott and Angie Alt

For those of you that have been following my journey recently you will know that due to multiple chronic illnesses I have taken a year or so out to live slow and heal. During this time there have been lots of battles in my brain to do with acceptance and grieving for a life lost (My post about diagnosis can be read here). So when I stumbled across the Autoimmune Wellness podcast I was already in. I love a good podcast as they save me when I have painsomnia or on the days I’m too ill to read and sick of screens. In podcast one Mickey and Angie spoke about their own journey and reason behind the book  so I ordered myself a used copy on Amazon. Let my investigation into my body and its quirks begin. I have a very lov/ hate dialogue with my body and chronic illness and for once I feel I may have the space to address this.


To be honest I am a little sceptical. The amount of ‘cures’ thrown at people with Autoimmune and invisible illnesses are huge. Everyone has a method or a miracle cure or the handy advice of ‘exercise more’ or ‘eat better’. What appealed to me here is the fact it’s a DIY guide and not a manual. Not ‘here’s what works’ but a try this journey and see what works for you. Anything I can adapt works for me and they have podcasts and Instagra. Sign me up, I’m a social media sucker!


So the book arrived and it has a pretty cover so I like that ✔️

Then a friendly story about the authors, another  ✔️ for me. 

It explains how it works in simple terms ✔️. 

Then my fave bit, a checklist quiz all about where you are on the spectrum of Autoimmune, I loved this ✔️✔️✔️.


Then I made the big bad mistake of skipping through the book to the section on food. I knew I’d panic when I saw the elimination diet but OMG it’s epic. It literally excludes everything I like. Bad me, I shouldnt have done this but I did. The pleasure of food and eating is one of the things I feel I have left, and the thought of a strict regime makes me panic a little inside. Even if it made my illness manageble I’m so stubborn and I love caffiene, cake and cheese!

 

Even though I don’t think I’ll manage this saintly diet I’m going to stick with the book for now. Those who know me well will know I’m a typical Gemini who follows the next shiny thing so this may be a short lived project. But my intent is to work slowly through the process and get to the diet when I’m ready and less resistent. It’s worth a shot no?

I’ve recently realised that I dont have to be the best at everything, I don’t have to do everything perfectly. I can start things and even if I dont do them to the letter I can extract some good from them. For example I did a smartphone detox a while back and I’m far from saintly, still addicted, but I no longer have notifications on, deleted the Facebook app and am able to  put it down. 3 good things came of that so thats success not failure right?
I’m going to attempt to blog my journey with this tis book so welcome to the adventrue be it long or short…

Who am I?

So…

I don’t know where to start this one. But yesterday I was asked who I am. I was floored.

I am Vic.

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But who do I present myself as? For years I’ve been me but maybe not me? Its such a confusing question. Can knowing who I am be the answer? I can’t answer it, partly because its a fluid thing and partly because I just don’t know.

I am Vic. I’m creative, passionate and imaginative.

 

For years I’ve played at being an artist and I did ok at it. I’m creatively inspired by stories true and fictional. I’m passionate about the power of the Arts and working with others. My imagination has taken me on some crazy adventures and projects, all of which I’m proud.

Over the past few years my ability to work effectively has been swallowed up by my physical and mental health. At first I said yes to everything in my excitement to be working in the Arts. I was good at what I did so work came to me and despite the struggle in terms of funding and consistency I was happy. The work grew and my company Wide Eyed Theatre was born. I worked in multiple roles for the company, as a youth worker, sessional lecturing and freelance. All aspects I have loved, and despite being poorly paid, I know along the way I have made a real difference in young people’s lives.

Maintaining this was a struggle and at some point amongst all the anxiety fear, pain and fatigue I stumbled. Something went wrong inside and no matter what I did I just couldn’t keep up or manage everything. Work was so important that the first thing to go was my social life and me time.

I began to reduce my life and cut out the extras that tipped me over the edge. I was stuck in a cycle of working or sick. I gradually got more and more fatigued, I’ve often described it as every day feeling fluey. I’d work then collapse and repeat. I had to take long breaks and nap or I just felt like I’d vomit. Everyday off and every nap carries guilt and I felt lazy and like I’d failed. So I’d go back into it full pelt, desperately not wanting to let people down. It wasn’t working. I began to feel drained creatively too. Partly from not feeding myself imaginatively by slowing down and allowing moments of peace and beauty. And partly because I was giving so much to everyone else and not myself as I was so scared.

So I fought for a diagnosis to understand why I felt the way I do. Why everyday is a struggle and why I let people down. I got used to wearing the label of chronic illness and found it easy to hide behind. In a bad place physically and mentally I also got into a bad place in a relationship and financially.

In 2013 I was diagnosed with Lupus. Since then its bounced around and things have been added and subtracted. I wrote more about the labels here. My current diagnosis stands at

  • ‘Lupus’ like auto immune disease1397203fa8512bc777ae182f1060e702
  • Suspected Behcets Syndrome
  • Joint Hyper-mobility Syndrome
  • Fibromyalgia
  • Chronic Migraine
  • Bipolar
  • Borderline Features
  • Depression and Anxiety

I fought to be recognised as ill and not fobbed off and I feel like a diagnosis means I’m taken seriously and its not in my head. The trouble is that I’ve fought so hard that its consumed me. Lupus and medical took over even back here I was discontent with the Vicki that said ‘Hi I’m Vic I have Lupus’ before anything else.

So when I was asked who I am it jarred and crushed the part of me that has become swallowed by the wolf that is chronic illness. Its my defence mechanism but has made my life so unbearable that I am the wolf.

In 2016 it all imploded and I’ve been left stripped of everything. My mental and physical health is fragile. I’m currently at risk of being made homeless and bankrupt. I’m stepping back from work due to feeling so breakable. I have nothing, yet there is glory in being stripped bare.

Then in this conversation a different suggestion was made. One that may yet have viability. I am still Vic, I have a chronic illness and this is how I manage it. This is how I choose to live with and tame the wolf.

I am Vic. I’m creative, passionate and imaginative. I am fierce and tame wolves.

We could all be a little kinder…

I came across this list earlier on Buzzfeed

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I love the fact it just asks us to spend a little time on ourselves before we hit crisis. I wish I could take my own advice. Slowly, slowly I’m changing my routine to include breathing and positivity. Todays tasks were to make candles, get the dogs back and watch Bake Off. Tick, tick and almost tick (it’s on in 10 minutes).

A lot of chronic illness comes with a spoonful of guilt. We let so many other areas of our lives slip so therefore believe we don’t deserve self care and kindness if we have cancelled a meeting or been late on an assignment. I know I’ve posted this before but it is so true: You can’t pour from an empty cup. Take care of yourself first.

So I’d be interested to know what you do to take care of yourself?

P.S. Today I’m grateful for:

  1. The garden and it’s ability to keep on growing no matter what
  2. Rose – In plant form, scent or lemonade.
  3. The crisis team who are keeping me afloat

 

 

 

Digital Life | A Guide to Healthy Apps

I spend A LOT of time connected to devices. In fact I’m rarely disconnected and even find it hard to sleep at night without a film or podcast on. I always want to do a bit of a digital detox but fail miserably. Looking at it in a different way though there are lots of apps, and games out there that are amazing. I thought I’d share my faves:

Pacifica | A CBT app for catching those thoughts

slides-moodWhat They Say:

MANAGE STRESS. LIVE HAPPIER. Daily tools for stress and anxiety alongside a supportive community. Based on Cognitive Behavioral Therapy & Meditation.Learn to identify and correct distorted thinking patterns.

What I think:

Pros: This is the most user-friendly and easy to use CBT app I have come across. Having explored CBT in ‘real life’ I have found it easy to continue to use these techniques within this app. My favourite bit is the Thought Tracker which enables you to capture your thoughts, then explore behaviours such as ‘fortune telling’ or ‘mind-reading’ (two of my habits). It then gives you the chance to turn these thoughts around to balance them. It also has a voice recording capability which I haven’t yet tried out.

Cons: I’m not sure how this would be for someone who was completely new to CBT. I love it because I understand all the terms. I also feel the loss of someone human or a trained professional to guide you. They often will pick up on issues within your responses to thoughts and catch those places where you are still being negative. It’s a useful tool but not a replacement for real therapy.

Breathe | Mindfulness with achievement badges

What they say:

GET MEDITATING IN 5 MINUTES. EASY.With this app, you can develop and apply kindness and compassion in your daily life through a process called STOP, BREATHE & THINK.

STOP | Stop what you are doing. Check in with what you are thinking, and how you are feeling.

BREATHE | Practice mindful breathing to create space between your thoughts, emotions and reactions.

THINK | Learn to broaden your perspective and strengthen your force field of peace and calm by practicing one of the meditations.top-slide-1536.png

What I think:

Pros: I loved this app instantly on appearance and for the ease of use. The best thing is closing your eyes for ten seconds and scanning your body and mind. It then recommends you different meditations depending on your current metal and physical state. I also love the badges as rewards and have even woken up early to get the early bird one.

Cons: My only issue is that I seem to get the same meditations all the time which gets repetitive and puts me off.

Never Alone | Truly demonstrating the potential of games to create learning 

Nuna

What they say:

Never Alone (Kisima Ingitchuna) is the first game developed in collaboration with the Iñupiat, an Alaska Native people. Nearly 40 Alaska Native elders, storytellers and community members contributed to the development of the game. Play as a young Iñupiat girl and an arctic fox as they set out to find the source of the eternal blizzard which threatens the survival of everything they have ever known.

What I think:

This game is utterly beautiful. It demonstrates the power and potential that video games have as an interactive learning tool. The storytelling is powerful, the game is absorbing and there’s a documentary thrown in there too. So far I haven’t found a con!

I’m also glad that the world is waking up to the potential of video games. They are not all unsociable and violent, but provide a creative and interactive platform for learning. TED talks have plenty of debate on this here.

My Pain Diary| a comprehensive diary to keep track of chronic illness

mpdiconWhat they say: CHRONIC PAIN & SYMPTOM TRACKER. Track one or more chronic pain conditions and keep your entries organized with Color Flags.

What I think:

Pros: This is a nice app with lots of detail. You first of all identify the type of pain or condition you have then add details. This includes adding photos, triggers, symptoms and even the weather. It’s helpful for me because you can download a report to take to the doctors or rheumatologist.

Cons: It takes quite a while to set up all the tabs for different conditions and options.

Daily Yoga | Easy to follow, high quality yoga routines

part2-bg.pngWhat they say:

The world’s most dedicated yoga app – fitness on the go!

What I think:

Pros: The routines are easy to follow with both written, spoken and image based instructions. Theres a wide variety of routines even on the free app.

Cons: If your workout gets interrupted mid session, for example a low battery, I cannot see a way to restart where you left off.

 

Headspace | Techniques and meditations to heal the soul 

What they say:

GET SOME HEADSPACE | Headspace is meditation made simple. Learn online, when you want, wherever you are, in just 10 minutes a day.

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What I think:

Pros: Like Breathe this is another great looking app with lovely design. The 10 day plan is easy to follow and a good starting point. Theres lots on the app in the free version to keep you going for a while. I like the fact you can link up with friends as this motivates me.

dfulnessCons: I got a bit bored after a while and felt reluctant to pay for it when there other free trials around. As a general point I love practicing mindfulness but find it difficult to concentrate when very anxious.

So these are my 5 apps or games. Please comment below with ones you love…

Bed Days Sofa Days

urbanoutfitters.com
urbanoutfitters.com

Bed and sofa days are a serious feature of Spoonie life. So I thought I’d put some things together to help survive them. I was inspired by a Buzzfeed list of all things! I do love a good list and this one was titled: 19 Insanely Cozy Accessories That Will Make You Never Want To Leave Your Bed

So it got me thinking, as a bed expert, what are the top things you recommend for a bed day? So I asked some of my fellow spoonies, here’s what they said:

urbanoutfitters.com
urbanoutfitters.com

Zoe: “Clean PJs, dreadful rom com films (friends call it the heart break hotel collection), colouring in book. Dark days, planning small adventures for the good days! Baking, I find this really therapeutic (not a great combo with steroids!). Crafting, small projects that can be finished easily. Going to a tea shop with good friends and family. Just a small outing to make me feel like I have achieved something with my day, for me that’s important! “

Zoe works in the Arts and is a Myositis fighter. To find out more visit www.myositis.org.uk
Follow Zoe on Instagram

Kim Joonsoo / Via enpundit.com
Kim Joonsoo / Via enpundit.com

Katie: “An extra duvet as a pillow always makes bed days more enjoyable for me. And keeping an array of boxes of cereal by the bed! Cereal helps everything”

Katie is currently studying for her MA in screen writing, works on and off with us a Wide Eyed Theatre, is a talented poet, and makes costumes. All this and she lives with Lupus plus overlaps.

urbanoutfitters.com
urbanoutfitters.com

Helen: “Fave teddy bears. Little book of inspiration / fave quotes. My mini-craft box with ‘easy’ / children’s activities in. Clean snugly blanket. Radio 4 iPlayer tuned to satire”

Helen is a trained Reflexologist and knows all about the art of relaxation and understands chronic pain. This is her page.

forever21.com
forever21.com

Nick: “A onesie, Netflix and a Tardis stress ball usually does the trick. I always try and write as well…. I’ve got a book of writing stimuli and I try and use that to take my mind elsewhere, to varying success. And my cats are very good for those sorts of days – boundless energy that you can’t help but be drawn into!”

Nick is an actor, performer, writer and facilitator. His webpage is here.

modcloth.com
modcloth.com

Pete: “Giant bean bags are really good for sitting yourself up. Midget gems. Aimlessly browsing Instagram. Usually when I’m having a bad day I can’t really breathe much so good music or good films rather than just staring into middle distance is always good… Apparently a strong coffee is good for my lungs which is as much excuse as I need there (just don’t tell my cardiologist!). Oh yeah, forgot to mention cats are excellent company in the small hours

Pete is an ace photographer and his work can be viewed here. Or follow Pete on Instagram.

urbanoutfitters.com
urbanoutfitters.com

Cassy: Endless cat memes. Clean duvet/blanket. Whatever food you fancy. Back to back episodes of American crime dramas. The Buddify meditation app. Browsing on Etsy. Bubble baths. Podcasts. Fluffy socks.

Cassy is a creative blogger and her blog provides an excellent distraction on bed days. You can read her blog here. Or follow Cassy on Instagram. She’s a busy bee and a super fighter of chronic illness.

urbanoutfitters.com
urbanoutfitters.com

And last but not least my spoonie sister Sarie: drawing strange things (when I can), youtube video binging (tutorials and vlogs), A duvet and extra comfy pillows, Clean bed sheets and pyjamas, Cake and tea, Comfort food like beans on toast, Hot water bottles, fresh air if i can get it, Pain killers, doggy hugs, blog writing, friend chatting, listening to woman’s hour or good podcasts, sketchbooking, list writing, cooking good food, heat packs, being surrounded with good objects, not feeling guilty (trying to remind myself of things- again list making is good for this), enjoying small tiny bits and remembering not to compare my self and my achievements/non achievements to others. Remembering that good enough is another persons great. Reading good things (love rainbow rowell & sarra manning books). More pet hugs!

Sarie lives in Barcelona where she is an illustrator and designer. Her webpage is here

urbanoutfitters.com
urbanoutfitters.com

So the top 5 bed day essentials seem to be…

  1. Clean, fresh comfy duvets with lots of snuggling potential
  2. Snacks that are good for you and easily on hand
  3. Distracting your brain whether it be through movies, books or activities or keeping creative with crafts, baking and writing, whatever you can manage.
  4. Treating yourself. If that means a nice cup of tea and some chocolate or a super bubbly bath. Guilt free as you need it
  5. Pets and fellow Spoonies: for hugs, moans, advice and to listen

 

Thanks to all my lovely, talented and courageous friends.

Please leave a comment if you have further suggestions.