My Invisible Journey

Wow, it’s been a while! My excuse for not having posted anything in such a long time was going to be that I haven’t been very well, but , of course, that’s a bit of a rubbish excuse, seen as, I wouldn’t have ever started this blog if I hadn’t been unwell. 😛

Anyway, I’m sorry I don’t have much of an excuse for not being very active. The last few months have been quite challenging and I wanted to get it all out there. Food wise, although I’m still very happy with my Gluten free, dairy free and refined sugar-free (apart from the very occasional Tesco’s free from chocolate chip cookies :P) way of life, getting back into a sort of routine; with the change over at work, dog sitting the gorgeous Molly and Guides being back after the summer break; I’ve been even more exhausted than usual. Plus, on top of that, I’ve been beaten down with colds and water infections which, as well as their own horrible symptoms, have sent my conditions into crazy flare ups. So if you were hoping for a food post, this won’t be it. I’ve still been cooking when I’ve felt up to it but it has been a case of Peanut Butter on Gluten Free toast, Walkers’ Ready Salted crisps and Deliciously Ella’s Mushroom Alfredo,
and although tasty, it’s not very exciting. I promise I will get back to it, my mind is whirring with recipe ideas and inventions ( a lot of which have been inspired by bake-off, may that glorious show rest in peace) but, of late, by body just hasn’t been up to it.

Over the past few months, and having not being able to return to Uni as I had foolishly hoped I might, I’ve come to the realisation that I am chronically ill ( I know right, finally!) and I will be facing the challenges that come with my illnesses (probably) for the rest of my life…But I haven’t really told anyone what’s going on. I guess I thought it would be easier. Carrying on like nothing had really changed and trying to be the same person I was, trying to do all the things I used to be able to do because I didn’t want people to think I was lazy or making excuses or being a drama queen. I’d just get on with it and save the tears, pain and exhaustion til I was in the safety of my own bed. I thought it was easier.

I recently met up with a friend I hadn’t seen since sixth form and hadn’t really spoken to properly since we were at school. We met up after I’d bumped into him and his family at work and they’d asked about uni and obviously I hadn’t been there for some time and it was unlikely I was going back. I thought I’d always been quite open and honest about everything but I realised then I’d done more than just tell people I was fine when I wasn’t, because it was easier, I hadn’t really said anything. I’d only Instagramed the good days, the memories, my new-found love of food and a few too many pictures of a certain cockapoo. So I think now is probably a good time to share the full picture and tell you my story so far and how I came to be the Invisible Girl.

I really don’t like opening up, this is going to be a really open and honest account of how I’ve felt and what I’ve been through. I have never liked talking about my problems as I know everyone has their own battles that they are facing and trying to win and I don’t like burdening people with my issues. My aim with this is really to shed some light and make people understand what it is really like to go through diagnosis and treatment of chronic, invisible conditions and to raise awareness of my conditions so people in the future won’t have t
o go through quite so much to get some answers. I’m sorry that It’s such a long story but it’s been a very slow process to get to where I am today. I’m removing my cloak of invisibility and my comfort blanket please be kind.

 

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My Story

I’ve always had headaches, always. I got them as a tiny little girl guide of ten. They’d make me cry, they’d overwhelm me. At the time they were put down to hormones, I thought it was normal. I’m not sure now whether this was the start of my problem. I was always clumsy; a sprained ankle here, a cut or bruise there. I was always in a lot of pain, when I started working at 17 my ankles, knees and back would hurt so much even after a short shift, but back then I thought that was normal. I was tired all the time, mum just thought it was my iron levels because I didn’t eat meat, and I thought being a teenager meant you were tired all the time. I’ve had a lot of tummy trouble, pain and bloating, my mum did too. I’ve always been bendy and able to do strange things with my body, I thought having ‘double jointed’ elbows was a cool party trick that grossed out my friends. All of these just happen to be signs and symptoms of a condition I have. Some I didn’t realise were anything other than normal or at all related until I was diagnosed.

I realised I had a problem in November 2014. That’s when I first went to my doctor at uni about the headaches and neck pain. Over the summer and beginning of uni they had been increasing in number and intensity until it was a daily occurrence that would often have me in tears in my room. I was given some medication and sent to a rheumatologist. Had blood work and MRIs, nothing came up. I had physiotherapy, 3 different ones, none of which could work out what was going on and why my body wasn’t responding to their treatment and things were getting worse. I’d been on a couple of different medications by this time and by April I’d had enough and went back to the rheumatologist, who after doing another MRI ( This time he MRIed where he was supposed to, as he hadn’t gone up as far as the neck or head the first time), found although there was an abnormality it was within the normal range but he sent me to the Neurologist anyway. I cried on the walk home with relief as he had finally admitted something wasn’t quite right but I cried even more on the way home from the Neurologist when he said there was nothing wrong with me. I think the emotional torment of having an undiagnosed problem, especially when you’re in so much pain and medical professionals are telling you it’s all in your head, is the worst
experience; you know deep down something isn’t right but people keep telling you otherwise and they make you think that you’re wrong and you’re just being a drama queen. That’s what I found toughest, trying to explain my pain so that I would be believed. I would love for every doctor that doubted my pain to live in my body for an hour or so and see how they would cope and then tell me there isn’t anything wrong.

By May 2015, I was having real problems, all I remember was my head being extraordinarily bad I kept feeling sick and being sick. I’ve had a headache everyday since. I had to take some time at home during the rehearsals for my exam performance and had to

be put in emergency accommodation when I got back to uni closer to the drama studio. I made it back for the tech and dress runs which were very difficult as I was having to do the sound tech and be on stage simultaneously. I wasn’t very well for the performances either but my course administrator said you’d never have known I was ill. I guess it was then I learnt how easy I made it look to hide my illness, and that I might be a decent actor after all 😛 I was put on some new medication called Amatriptyline, which works by blocking pain signals, and sent to a new specialist who admitted by body wasn’t right and gave me some nerve block injections to try to help. Despite still having a headache every day, the medication and treatments allowed me to enjoy my summer especially visiting my uncle over in Bali.

However, after going back to uni in September 2015, Things got really bad. The headaches were getting much worse, my whole body ached and I was exhausted all the time but was barely able to sleep. I had another round of injections but this time they didn’t make anything better. Then something else started to happen, my first year at uni I’d been fit and healthy I played on the badminton team and had kept up the activity over the summer, all of a sudden I could barely walk across campus without getting out of breath, I was dizzy a lot, I kept feeling sick and being sick. I felt kind of funny like I might faint or fall asleep, like I couldn’t keep my head up. I had to sit down all the time. Something was very wrong, I went straight to the medical centre. I turned up at reception white as a sheet and completely breathless, I don’t even think the receptionist spoke before rushing me round the corner and almost straight in to see a doctor. My heart rate was very high. I had an  ECG and a blood test. They called a cardiologist and took me off the Amatriptyline as they thought it may be causing the problem and gave me something to take my heart rate down. I got a taxi home and went to bed but when I got up it started all over again. One of my housemates called an ambulance. The paramedics knew I wasn’t right. My heart rate was over 140 and I’d been doing nothing all day. They took me to the hospital. I was scared. I had some more ECGs, more blood test, urine tests, some worried phone calls from my parents. But after having laid down for a little while, I begin to feel a bit better. I’m told nothing’s wrong with me and I can go home. I feel like an idiot whose wasted everyone’s time. I struggled getting to and from uni, and even when I did get in I couldn’t concentrate. I was trying to tech shows and had to let other people run them. I had to listen to my friend Chad do our radio show from my bed. I felt bad, I was letting everyone down. But my body was letting me down. Now the Amatriptyline was gone I had nothing for the pain so more drugs were thrown at me to try to control it (and those were the days before I got myself a pre payment prescription card i.e expensive). I was struggling to cook. Tempers were fraying in the house as I was stupidly trying to organise everyone and everything. I was stressed. I wasn’t getting my uni work done. Staying in bed all day and being alone made me feel lower and lower. All the new medications I was trying each had their own nasty side effects which I had to contend with. I’d got some which were meant to help my head and my heart. They seemed to be doing okay with my heart until I had another episode which led to another cycle in a&e but this time I was having chest pains as well. All I had done was get out of bed to make some risotto for dinner. The GP refered me to a cardiologist for an echocardiogram (an ultrasound of the heart) to make sure there was nothing physically wrong. But of course there wasn’t. All my symptoms, the sickness, the dizziness, the high heart rates, the breathlessness were all put down to anxiety. I was seeing two different talking therapists to try and help but they just made me feel worse having to talk about everything I was going through. I spent more and more time back home in Essex. I ended up with a never-ending cold which didn’t help matters at all. I still spent most of my days in be in tears, feeling lonely, desperately longing to feel better and to have some answers, to not be made to feel like I was crazy, to do all the things I’d loved the year before; my badminton, my sound tech for shows, my radio. I was nominated for a student radio association award for Chad and I’s show. We were one of six shows in the country to have been nominated for best entertainment show! I was so proud and amazed, I went to the awards ceremony at the indigo O2 in london, it was great even though we didn’t win. But I couldn’t stay on for the after party, I could barely stay on my feet. By my birthday (11/11) I still felt awful. My boyfriend took me to a spa for the day, which was a lovely idea, but made me feel worse rather than better. I was sick twice on my birthday. I went back to the doctor the next day and she thought all the medication may have been causing the headache the whole time and none of it was helping. So I agreed from that point on to go cold turkey. I struggled on for another week or so before deciding I was going to take my extended christmas break. I knew I was much more ill that the doctors thought I was. I decided it was necessary to take a break and try to start again. I signed the paperwork and I went home. I didn’t really tell anyone I was going. I didn’t have the courage. I didn’t want to get more upset than I already was having made such a huge decision to leave my friends and have to start again. I also didn’t want to be questioned when I didn’t know what was going on. They’d realised I was ill and wasn’t doing as much as I used to and I was missing a lot of class but people didn’t realise how long-term it had been as I’d hidden it quite well.

Once I was at home I took charge of my situation, determined to get a second opinion. I picked a neurologist, back home, fairly randomly and booked in an appointment. I went back to work, that was so tough. At first I was on box office which was okay as I was sat down for my shifts, but then all the tills broke and we haven’t really used box office since.

I struggled, the pain in my back and knees and ankles was worse than ever before. I’d get random rashes on my chest. I had new pains in my hips and the pain in my head worsened. I couldn’t bend, I couldn’t lift, I could barely walk sometimes. I’d get home crying with pain and exhaustion. I was sent home a few times where I’d had an episode with my heart or I was in screaming pain with my head and needed to lie down. I had another MRI and this time the Neurologist took my ‘inside normal range’ abnormality seriously and noticed other things that weren’t quite right. This is when he sent me to a neurologist in London. I spent New Year’s eve with one of my worst headaches and in tears wanting to join in the celebrations. I put a smile on my face and came downstairs and pretended I was okay ( There’s a recurrent theme here :P)

January 2016. This is when things started to change. Yes, I had yet another MRI. I go back for my follow-up fearing the worst, fearing that I was wasting everyone’s time all over again. But not this time. He thinks I have 4 problems. 4! I was so happy ( yes you can be happy when you find out you’re ill). I hadn’t dropped out of uni for nothing, I hadn’t been wasting my time, there was actually something wrong with me, there were actually maybe 4 things wrong with me! The first was chronic migraine, which was kind of a given, and for the other 3 I was sent of to specialists for more investigations. As soon as I looked into each of the problems, I knew they were what I had, and everything that had happened over the last year, and some things that had happened in my life, fell into place and made perfect sense.

I Have Ehlers- Danlos Syndrome Type 3 ( Hypermobility Type). Diagnosed 18th February 2016. https://www.ehlers-danlos.org/

EDS is a connective tissue disorder. In simple terms it means by body is too stretchy. My joints are the main problem and this can cause me a lot of pain. the pain for me is mainly in my hips, knees and back but it affects all my joints and they click a lot as they are in slightly the wrong position. Many people dislocate very easily, I’m lucky that I don’t and think my sporting background has helped with this.However I do injure and sprain very easily. Some days I can barely walk because of the pain and use my walking stick. If I’m going shopping I will use a wheelchair, many with EDS are in a wheelchair full-time and even compete in the Paralympics such as silver medalist Piers Gilliver. I can’t even use a chair for very long as it causes my hips and back to flare up. EDS is all about fidgeting to get comfortable without over extending your joints. Working is very difficult as being on my feet so much can cause flare ups in my joints and often wear a variety of supports to work under my uniform especially my knee supports and full body Tubigrip. EDS also causes many of my digestive issues and means I can’t eat big meals. Cutting out gluten and dairy has really helped cut the bloating down but I also can’t eat random things like Quinoa as it aggravates my stomach. I have other bladder and tummy issues too. It also causes major fatigue and brain fog, stretchy skin that bruises and scars easily ( I will have a stab wound from a sword fight on my thigh forever). I’m exhausted all the time and never have enough energy to do the simplest of tasks.There is no cure for EDS and I will have to live with it for the rest of my life. I can only learn to manage my symptoms. Since March I have been having some great physiotherapy from my amazing physio and although I don’t feel like it’s helping a great deal at the moment, when I have my other problems under control I will have an amazing tool box of exercises, tricks and tips from someone who really seems to understand! I am very sad to be finishing physio next week and I worry how I will cope without it but I hope I will eventually be able to get stronger again.

I Have Postural Orthostatic Tachycardia Syndrome. Diagnosed 18th March 2016. http://www.potsuk.org/

So you know I said my body was too stretchy from my EDS, well my Blood vessels are stretchy too, and this causes me to have POTS. The definition of POTS is that when you go from sitting or lying to a standing position your heart rate goes up by 30 beats or more OR your heart rate is over 120. Let me put that into perspective a healthy individuals heart rate will go up about 2-5 beats when you stand up…sometimes mine jumps by 50! So when I stand up my heart thinks it’s doing cardio, no wonder I was out of breath, dizzy and nauseous. And no wonder they couldn’t find anything wrong when I laid down. It also causes sweating and shaking, weakness and fatigue. Many people also faint, I just feel like I might. This is why I sometimes also use a stick as I can feel very wobbly. On especially bad days I will use a wheelchair to go out as I feel I will fall every time I get up and can only stand for 30 seconds or so. I often use a wheelchair to go shopping as I can’t walk round shops for even short periods without needing a rest. I have been on medication to help my POTS since March, one to bring my Blood pressure up,which I must have half an hour before a meal, and one to slow my heart rate down which I just have in the morning. I have been stable on the right doses since July and it has generally improved but even with the Medication certain things can cause flare ups. Firstly, infection or a cold, in the first week of this water infection I was back to square one was so shaking ( my dad thought I was having a fit my shakes were so violent) and having such bad palpitations I ended up in a&e and I could barely stand for a week. It’s not laziness, I don’t have much of a choice, I do spend as much time as possible horizontal, not because I like it but because it helps.But other things that make it worse are heat, eating too much, upright exercise ( no more badminton for me 🙁 ), having my hands above my head and long periods of standing. Things like this make something as simple as having a shower (heat, hands washing hair and standing) a real struggleand forget about drying your hair. I also couldn’t drive for several months whilst they were getting my medication right. In addition to my medication I wear sexy compression tights to help push the blood up, drink much more water than a healthy person and add more salt too my food. It also means I can’t tolerate alcohol, caffeine, refined sugar or a lot of white carbohydrate. My food idol Deliciously Ella also has POTS. POTS is all to do with the Autonomic Nervous System and October is Dysautonomia awareness month so this is my way of spreading a little awareness for a little known condition.

I potentially have a CSF Leak.

This is the potential cause of my daily headaches as well as my extreme ones where all I can’t do anything but lie there clutching my head, screaming and crying waiting for the wave to pass. From my MRIs and the positions of some of the part of my brain, they think I may have a leak of brain fluid somewhere in my head or spine meaning there isn’t enough pressure in my head. However, to fully see if this is a problem they have to do an invasive procedure called ICP monitoring where they drill a small hole in my skull and place a monitor known as a bolt there for a day or so and they will then know what the pressure is like in my head. But as both POTS and EDS can cause headaches they wanted to treat those as much a possible before going down this route. We’ve got the POTS basically under control ( when there’s no pesky infection holding me back, I mean I can stand up without feeling dizzy I’m not doing the marathon anytime soon) and I still have pretty bad headaches all of the time, that sometimes still cause me to scream in pain, so this is the last option and I’m undertaking the surgery next month. Part of me is happy as its been a long time coming but I’m also very scared not only because its surgery and its my head  but because It could come back that it isn’t a problem and I’ll still have these debilitating headaches which I started my journey with 2 years ago and I still wont know where they’re coming from. If I’m honest with myself I couldn’t have gone back to uni this year still feeling the way I feel but this op is the main reason I’m not back. And it’s also taken much longer to get my POTS under control than first thought so I’d originally thought I may have been done and sorted by september. It’s dragging on.

 

Since I’ve been in my treatment phase with everything I’ve had good days and bad days, I always will. It’s been tough. On my journey so far I’ve seen 2 rheumatologists, a cardiologist, 4 neurologists, a autonomic (pots) specialist, a neurosurgeon, 4 physiotherapists and 3 psychologists and been on countless medications to get me to where I am now and part of me still feels I haven’t achieved anything since leaving uni nearly a year ago. I take ten tablets a day just to be able to function (and I was the girl who could never swallow tablets) , none of those are for pain. I’ve tried every treatment possible and it’s exhausting when nothing works. Yes, I’ve got my diagnosis and I’ve started treatment and I’m trying to do things rather than staying in bed but I don’t feel that much better. 

I worry about a lot of things. I worry about seeing new doctors, because of the bad experiences I’ve had in the past, I worry they won’t believe me or they’ll palm off my conditions because they don’t know enough about them. I worry about social and family occasions where I have to still pretend to be okay as it takes too much out of me to explain the reasons I’m not okay. I worry about losing friends because I’ve let them down one too many times. I worry about money; i had to continue to pay rent whilst i wasn’t at uni with not enough income, I’ve had to pay for equipment to help with my physiotherapy, I stupidly paid for some expensive counselling for too long when it wasn’t helping , I have to pay to travel into london for all of my appointments, I find it very difficult to work; i can’t work many hours and if i have an episode or a really bad day and end up getting sent home I don’t earn anything, if I’m off sick with an infection I don’t get paid. I feel bad that my mum has to support me when she shouldn’t have to. I feel very guilty about not helping out enough and not being able to do things. I worry about my health and if despite everything I do to try to get better it will get worse. I worry about the future; if I’ll get back to uni, if I’ll be able to work at all let alone find my dream job, what I’ll be able to afford, If i’ll be able to have children and if I am how would I cope with a pregnancy without medication, how would I be able to hold and look after a child, would I pass all this on and have to see them in pain. I worry that this will be my life forever. It gets me down.

But on this journey I have learnt a lot. I’ve learnt who will always be there for me and who my true friends really are, I’ve learnt that I’m stronger than I believe I am and I’ve overcome a lot and, most importantly for me I think, I’ve learnt what is best for my body and when to say no. I’ve had new experiences, picked up new hobbies in dogs, food and craft (not that knitting lasted long) and met some great people including medical professionals and fellow sufferers. My little support groups on Facebook remind me that however alone I feel I’m not alone.

The other day we visited my boyfriend’s Nan and told her about my upcoming operation and told her the basics of this story and she said I was so Brave. I’m no braver than the next person everyone has their battles, everyone has their own little victories. I’m not doing this for sympathy or admiration. This isn’t my sob story VT before I emerge in front of the judges as a star. This is my life everyday: the pain, the symptoms, the treatments, the sadness, the fear but most importantly the hope that something better will come…eventually. I know I can’t be fixed but I know I’m going to die trying to get better. Thanking for reading and hopefully understanding a little better.

‘Everyone you meet is fighting a battle you know nothing about. Be kind. Always.’