Welcome. A Girl Behind Dark Glasses is an unique true story aiming to raise awareness for life-threatening condition ME and give hope to others. At the age of 15, Jessica became acutely unwell with an illness called Myalgic Encephalomyletis (M.E). She was hospitalised from 2006-2010, suffering with the most severe form of the condition.
It is National Loneliness Week and I want to talk about how loneliness has affected me within my M.E. journey. When I first became chronically unwell, my life changed dramatically. I had been a very sociable 14-year-old, who enjoyed school and being with my friends. The truth was, I didn’t have that energy to spare anymore. At the beginning, I didn’t have the mental or physical energy to spare to socialise and it was something that I missed greatly.
After a few months, my friends would see me less because they didn’t know when I was well enough for a visit, and I happened to live in a little village away from the school, so I missed out. It is amazing how a house can be full of people (I was in a family of five), yet still feel like you are totally alone. No one could really understand what I was going through, and this just added to the frustration and loneliness that I felt being so ill.
I moved to hospital at the end of 2006, and that was insufferable. My family stayed with me at first and became my advocates, and social stimulation. However, after a few months, they were not allowed to come to the hospital for more than ten minutes a day. This was when my loneliness hit its lowest. I craved communication, but the nurses didn’t really have the time to try and work out what I was trying to say and didn’t know how to listen to me. My family were chaperoned when they were with me, so I didn’t get to spend any quality time with them. My mood dropped. I stayed positive because I had to keep telling myself that it would get better, but I started to dream the day repeatedly. I didn’t know when I was in reality and when I was dreaming. It was miserable.
This was before the days of social media. We had a little bit in the form of MSN Messenger but there was no Facebook, Instagram or twitter to connect to more people suffering with M.E. or any other chronic health disease. I didn’t know any other people suffering from ill health, let alone chronic health. It was a completely new to me. Social media can be both a blessing and a curse. I would have loved it to be around at the beginning because I don’t think I would have felt quite as alone but also to see what all my friends were up to would have been quite upsetting because I couldn’t join in.
In the time that I was completely missing, I felt like my friends and family didn’t really know how to deal with me. I was unable to communicate and this was problematic. I watched as they all grew up, and I didn’t join them. It was incredibly hard to watch the changes and not be able to do anything about it. The world of one room became my safe haven. I knew what was going on in that room, it had become my whole world. I didn’t see anything outside these four walls. How could it be so lonely inside it?
When I started to re enter the big wide world and started to be able to see my friends a bit more, it made me realise quite how much I had missed. I had lost out on so much and it was incredibly painful. Friends were now at university, I hadn’t even got passed my GCSES at school. I was stuck in a time warp. I challenge anyone to not feel lonely when you realise what is lost or you can’t find your tribe of people who get you. This is where all the social media outlets became incredibly useful to explain my life to someone else. I felt like I could connect with people for as little or as long as I was able to. I started to learn what my identity was. For years, I think that the M.E. Monster was my identity. It had taken over every aspect of my life, I had nothing else.
As I have started to improve further, I think I struggle more to know who I can connect with. People don’t expect me to still be suffering from loneliness but it is still there, just in different aspects of my life. Connecting with other people who suffer from this is very helpful, but it doesn’t really solve the problem. If I could say one thing to a person who doesn’t suffer with ill health, it would be: don’t forget those who go a little quiet on you.
They are probably struggling in more ways that one and need people to rally around them.
Last week was an emotional one. We were looking after my brother and sister-in-laws cats for a week, whilst they were on holiday. It gave us a chance to not completely follow a routine. I don’t think I’ve done this since I’ve been home from hospital with care. So that would be 9 years.
It’s just always been a procedure, I would flick in between rest and small activities to try and manage my symptoms. I haven’t done things that are out of the ordinary in the whole time I’ve been ill. There is always a strict plan at hand, which could only be changed if my M.E monster was causing me increased symptoms. I don’t remember doing anything spontaneous for a long time. However, this is all about to change. You can’t have a strict plan when you have a child, there has to be room to adjust, especially with a newborn.
I decided to start getting used to this now. I must say that the crippling exhaustion is something I generally find hard to push through… I simply can’t fight it. I have to go with my symptoms. In a way, it is working with the M.E. Monster for the best results.
Anyway, that week symbolised the first time I just played it by ear and how I was feeling. I wasn’t regimented to a plan. It felt very empowering. On one of the days, I decided that I wanted to wash my hair, but in their flat, there was only a bath with a shower in the bath. I decided as I wasn’t alone that maybe I could try having a normal bath? I mean I’ve not had a normal bath since 2006. I’ve had one Argo bath in hospital, where I was dipped into the water via sling for 30 seconds and that was the experience.
It was strange because I had to try and remember what it was like to stand up and get into a bath. I haven’t done it in 13 years! Samuel helped me get in and helped lower me into the bath. That feeling of having my body immersed in water was incredible. Suddenly, it was as if I was back to being 14 again, I remembered exactly what to do. I could remember doing it before.
Little bump clearly loved the hot water being on her and all my aches and pains felt a tiny bit easier, just for a moment. So I had a relaxing bath, listened to some music and it was really as normal as that! I was completely elated that I had managed to have one. It felt like such a big deal, which to a healthy person would seem pretty ‘normal’. The interesting part was getting out of the bath! Samuel held my weight, and again it was as if my body knew what to do. I suppose I had been having baths all my life before I was ill.
Having rested flat in bed, the payback was doable. I was expecting a lot more PEM but so far so good. Now, I’m going to just keep resting and taking things as I feel, with a little more spare of the moment in it. Wish me luck!
It’s not often that you get an invitation to the Queen’s Garden Party… so I was pretty shocked to get the letter through the post! I was invited for my charity work and raising awareness for severe M.E. It came in the thickest card I have ever seen and was really quite special. I thought about how happy my Gran, Grandma and Grampy would have been to see me go.
Despite feeling incredibly lucky to have been invited, a little part of me felt for all the other M.E. sufferers who weren’t going to be able to come or get that opportunity: they are just too poorly. The day after the Garden Party was my 5 year anniversary of me standing up for the first time and it just highlighted how far I have come.
I had never been to a Garden Party, let alone the Queen’s so had no idea what to wear. I was also very aware that I needed to take things slowly, as my energy levels were very up and down. I know of people who have received an invite to such an event but were too poorly to go.
I chose a dress that would compliment my new pregnant figure in a light blue with pearls as accessories. I spent the morning getting ready with a face full of makeup! This was for two reasons, one was sun protection and the other was to make me look alive! Invisible chronic illnesses are difficult because you don’t always look as sick as you feel. Although I was excited, I was pretty exhausted too, having not had a good night either. I had my hair curled by my lovely carer just before we went.
On the journey to London, I rested. My chair was reclined and as flat as it could go. Baby seemed to be excited too, as she made her presence known! We were given a car space right outside Buckingham Palace and arrived there with good time to spare. This meant I could have a rest beforehand and go somewhere quiet to feel ready. I managed to surreptitiously drop a bit of my food down me (the joys of not having great fine motor skills). The area around Buckingham palace wasn’t particularly good for access. There were a couple of times when my wheelchair got stuck on the pavement or there wasn’t a dropped kerb.
There were a huge amount of people attending the garden party. All having done incredible inspiring work for charities, the military and other important things. It was an honour to stand by them all. The queue was massive but thankfully we managed to skip the queue because of my wheelchair and went straight into the garden gates. It was a beautiful day and we went on a walk around the gardens with all the beautiful trees and flowers. There was minimum ramps so I couldn’t just get onto the grass but enjoyed it from afar.
After going along the whole garden, we made our way with the rest of the crowd to hear the national anthem being played as the Queen came out with the rest of the royal family. There were so many people that I could not see when they came out. Some people were presented to the royal family. The Duke and Duchess of Cambridge came down the path we were in. It was immense to see how many people were waiting just to get a glimpse of the royal family.
We got stuck in the middle, as people were crowding around and I didn’t feel I could get the wheelchair out of the tight space. All wheelchair users are lined up at the end of the afternoon to meet the Queen on her way out. Where I was stuck, we missed the tea! How do you go to a garden party and miss the tea?! When we were lined up at the end, it turned out the Queen was pretty shocked I missed the tea too!
‘No tea?!’ She exclaimed ‘That is rather sad!’
All the people who were lined up had done amazing work. Just talking to some of them was wonderful. It was a great celebration and was quintessentially British.
When we went to leave, there were so many wheelchairs to get around. It was the most wheelchairs that I had seen together before and made me feel a bit claustrophobic. The way home was the hardest part. It took a couple of hours and normally I would have stayed over. Doing two trips in one day was quite exhausting and not very M.E. friendly but I did feel amazing that I managed it.
Once we got home, I collapsed on to the bed and stayed there. I had a lot of pain relief and patches but it was worth it and now it is time to recover.
When I became unwell in 2006, I literally thought that like any other virus or bug I had previously got, it would just get better quickly and I would be back to my old tricks soon enough. I never thought it was going to be a seriously life changing condition that would be with me for life.
When I was formally diagnosed with M.E., I didn’t know anything about it. I didn’t know that the majority of people live with this condition for life. I was naive. I was young. I was carefree. My life changed dramatically overnight and even now, I don’t actually remember what it feels like to be fully well or to be how I used to be. That is a distant memory from far away, in an alien world to me.
I had to completely readjust my expectations for my life. Before, I wanted to be a globetrotter, I was a high achiever. Life in its very essence was there for living. Then M.E. struck and I couldn’t let go of having those expectations for the future. It was what kept me going. Over many years, I realised that I needed to change my idea so I didn’t constantly feel rubbish that I was not achieving what I wanted in life.
At the very beginning of my M.E., I think keeping that optimism that things would go back to how they were, helped me enormously. I know this sounds strange. When I was diagnosed, I had no idea what it was. I didn’t know anyone with M.E. and my parents decided to not tell me the eventuality of having M.E. for life. There was very little social media in 2006 so I didn’t find lots of other people with M.E or read personal stories. It was all new.
Now, I’m obviously more aware of the reality of M.E. and I think I have changed my perspective quite considerably. I now enjoy the small things that I achieve. If you had told me five years ago that in 2019, I would be expecting my first child, I would have thought you were mad! That is the thing with the future though, it is uncertain and you never know what’s around the corner.
One of my main reasons for publishing A Girl Behind Dark Glasses was to show the treatment of severe M.E. and to change how we view it. In 2006, there was barely any information or treatment of M.E. That was thirteen years ago. If I went back to that time, I would have hoped that we would by now have proper biomedical research into the disease. A cure maybe? The reality is, we are no further forward.
My family had to fight so hard against the psychiatrists to stop me being taken to a mental institute with a physical illness.
I hoped that it wouldn’t still be the case in 2019, but it is.
As soon as I found out I was expecting, I did everything I could to get as much support as was humanely possible, to make sure the baby and I were going to be safe. Within minutes of finding out, I was on the ball, calling my doctor’s surgery, the midwife number, my M.E. doctor, before I told anyone else.
On the outside, I was as calm as a cucumber. On the inside, I was a bundle of nerves. My thoughts were a jumbled mess. It was weird because I felt completely out of control, as if I was been thrown into the deep end and I didn’t know how to swim. Interestingly, finding out that I was pregnant, didn’t feel like I thought it would feel or how it looks in the movies. My first reaction was fear but I knew that in time I would feel better about the situation. The only problem was, it got worse.
Basically what all women forget to tell you when you find out your expecting, is how scary it is to go through. Due to pregnancy hormones, my M.E. started to improve a bit, yet my mental state seemed to get worse. I couldn’t understand it, as I had fought many years to get to a place where my M.E. was actually improving, and I had yearned to have the opportunity to have a child. Should I not be feeling incredibly lucky, when so many people don’t get a chance because chronic health stops them?
The only reason I am writing this blog on this subject, is because I think more women need to be honest about their reality of pregnancy. For some women, it is a piece of cake. Others may find it stressful, and some don’t cope at all. Yet, we barely hear about those who really struggle because it should be something that you are happy with. I wouldn’t say that I have been completely not coping, I have just found it a lot more stressful than I thought it would be.
My GP went above and beyond to help me when I first saw her, on the same day that I found out. She wrote letters to the heads of departments, to neurologist, midwives, and the obstetricians. She got answers to everything that I needed. When I first met the consultant obstetrician that was going to be looking after me, my mind was at rest. However, all the things that he had said would go into place, didn’t materialise. I was meant to get some psychological support to help me, as I was coming off so many medications. This never happened. I was meant to be having more scans and appointments with the obstetrician to keep a good eye on me. I did have another appointment with the obstetrician but unfortunately, I saw one of his junior colleagues and she didn’t have a clue. I went from feeling like there was a plan, to everything being up in the air, as she went against everything that the consultant had said previously.
After trying to keep myself going for a further ten weeks with no support, I felt that I should try and reach out to my original consultant. I was sick of struggling and not feeling like myself. After I had sent the email, it took under 24 hours for everything to be sorted. They were amazing! I have an appointment with the original obstetrician in a week and feels like they are listening. The receptionist who rang me to arrange the appointment said that she wanted to say ‘well done’ for having the courage to speak up.
It is important to talk about how you are feeling, chronic health or not.
There was an overwhelming response to my pregnancy news. Rightly so, despite being happy for me, there was a lot of concern as to how my M.E. would be affected. A lot of people were interested in what the journey of being pregnant and suffering from a chronic illness like M.E. would be like… so here I am!
One of the main things I noticed first happened quite early on. The bottom of my back was sore and when I moved it was painful. I spoke to a friend who has been in my position, and her advice was to have physiotherapy.
The very mention of the word ‘physiotherapy’ filled me with dread. I have had some really good physiotherapists but I’ve also had some really bad ones too that have damaged my health with the awful Graded Exercise Therapy. When I was first admitted into hospital in 2006, I had a physio. There was so little known about how to treat M.E. (I know it is not much better now) and the physiotherapists didn’t know how to handle a 15 year old who was so desperately unwell.
The ‘normal’ practice for a physiotherapist is to push your body into moving and getting fine motor skills back. They are not used to having to go with the body and to go slowly. It’s simply not how they are taught. They contacted AYME and were told to try Graded Exercise Therapy – this was a nightmare. They would push my body, despite my tears and protests. The exercise would be increased by 25% every week and you just had to do it. There was no choice as to whether I felt able to do the exercise. In their eyes, I needed to be able to sit up at a 90 degree angle and I would do it no matter what! My parents and I came up with a nickname for the physiotherapists, they were ‘physio terrorists’ to me! Graded Exercise Therapy is one of the reasons I became so unwell and stayed like it for many years.
Although I did have other more understanding physios, the trauma of GET clouded my view of physiotherapy. I have always said that I need to do some exercise to keep my body moving because once you lose functions, it is incredibly hard to get them back. I had physiotherapy and occupational health therapy to help me walk up the aisle on our wedding day. Rather than pushing my body, they worked with my body and what I was able to do on the day.
Anyway, I was referred to have my back looked at. It is a common problem with pregnancy. Basically, my pelvis ligaments and tendons were stretching and were not moving in alignment with the rest of my back, hence the pain. They gave me a few gentle exercises and some passive ones too. I find it very hard to put my trust in a physio or to be honest ANY physician because the relationship between M.E. and physiotherapy is such a challenging one. It has a messy history.
Luckily, doing those few exercises did not cause my M.E. to be worse. I now where a tubie grip around my bump as I wait for me to be big enough to wear a maternity belt! As I have started to grow more, I have noticed that my back is more sore but I am dealing with it a lot better. Having it start early on has prepared me for now.
Thankfully, the physio realised that my back problems were more deep seated, and I have been referred to a Woman’s Health Specialist to have acupuncture on my back. I feel really lucky to have had friends who have been in a very similar position to me.
My advice for women suffering with back problems due to pregnancy is: get it sorted out! I read a post on the Gas and Air blog about how most women should have some physiotherapy to combat what pregnancy does to your body. It shouldn’t be the norm that we just have to deal with extremities that come with being pregnant. There is help out there, so go for it! It is important to note, that many health professionals simply do not ‘get’ M.E. It is important to be really strong and know your body. If you feel an exercise is not helping, then you need to voice that. I find it really hard to voice my opinion because I am used to being told that something is all in my head. I feel quite proud that I have stuck to my guns this time and am doing what is best for my body and the baby!
The weeks have been flying by and as of today, I am officially 20 weeks gone! It has been strange because my general M.E. has improved a little bit overall. I can walk around the downstairs of my house (with support) and have been able to play the piano. I even ventured for a walk down the path of the garden! It is so lovely to be able to have that freedom – I will never take it for granted.
There is a real mixture of cases where women with M.E. have either really improved in pregnancy or have gone into a setback. I was worried that I was going to be one of the latter cases, but thankfully I seem to have made some positive changes.
So what has changed since I last updated you? Well, the Hyperemesis Gravidarium has got a lot better. I was hospitalised with it six weeks ago, when it was at its worse. The reality of my situation came to light, as it took four anaesthetists just to get a cannula in! It has been decided that I will probably have to have a PICC line put in because my veins are not big enough for the right sized cannula in. I have to eat little and often, but I am pleased that it has got a lot more bearable. Despite still feeling nauseous most of the time, I’m able to manage it and it means I have a new lease of life!
I had to come off a lot of neurological medications, which has been anything but fun! It has been decided that it is important that I stay on the gabapentin, at a lower dosage. It helps me with my neurological pain, particularly all the nerve and eye pain. I suppose one of the benefits of being pregnant is I could make sure that the medications that I am on are beneficial. I was on a lot of medications that literally weren’t doing anything. In fact, my body was addicted to the medications. Apart from the Gabapentin, I have come off most of the neuro drugs. Due to there being such a lot of medications that I needed to come off, the obstetrician decided that I would need to have support from a psychiatric midwife. This is not because I am psychiatrically unwell, it is because I need supporting in all aspects of my health. However, I have been waiting for this referral to go through for three months now and still there is no news! I suffered quite a bit from anxiety, and generally not feeling myself. They said that this was not only due to the medications I was coming off, but also the general pregnancy hormones. A double whammy!
Most of the time, I am feeling a lot more stable. I feel slightly overwhelmed with everything that is happening but I have been very lucky that I have found a lot of friends who are mums from all different walks of life, to gain understanding of what my body is going through. That is where social media has been a blessing, being able to go onto Instagram and find other mums who are disabled and are still winning in life.
I have decided that it is important to blog about my experience, even though I wasn’t sure about it at first. I have found it so useful to find other mums who have been through pregnancy and have overcome adversity to get there. If those mums had not been writing about their experiences, I would have really struggled to cope with everything.
I am now enjoying the second trimester! I am learning more about my capabilities and how strong I am. Even though I have felt pretty useless at times, I know that I am actually doing quite well and have been through worse. I feel completely blessed to have got to this point, and I hope that I will have more to tell you next time!
Over and out for now!
When I first found out that I was unable to have dairy or egg anymore, I thought that was the end of having treats whilst I was in town. I am not able to get out as much as I would like to due to my health. In speaking to my friends who also had a dairy intolerance, they recommended that a cake shop in Gravesend that would not disappoint – they were right there!
Vegan Antics is a wonderful cake shop that will leave your taste buds tingling at the massive selection of sweet and savoury options. It has the most amazing range of flavoured cupcakes and cakes, as well as having a really good selection of paninis and sandwiches.
I have always loved ice cream, especially Mr Whippy style, and I thought I would just have to live with the fact that I would never be able to have that style of ice cream. That was until I found Vegan Antics. They have an ice cream machine, which has whippy style ice cream! I haven’t even mentioned the fabulous selection of milkshakes that are available! It means no matter how many times you visit, you will never get bored of trying new things.
On my first visit, I had my first hot chocolate with squirty cream on top. It was delicious and really started to open my world up to the endless alternatives available in this shop. Not only does it cater for vegans but it is great for allergy sufferers, as they even do a selection of gluten free cakes too. It is made very clear what it is available and I love the fact that each time you visit, you get a surprise as to what type of cake is for sale! The attention to detail is second to none, the cakes not only taste incredible but look almost too good to eat.
My niece and nephew have milk and dairy allergies, so when they visited us, we decided to take them to Vegan Antics. It makes such a difference to be able to choose something nice, as normally there are only a couple of choices for vegan or allergy sufferers. I bought a selection of cupcakes, and a chocolate brownie. It tasted brilliant and had my husband drooling for another piece. The wonderful thing about Vegan Antics is that it welcomes everybody to enjoy a treat, and it tastes so good that you don’t need to be vegan to enjoy it. My husband, Samuel, doesn’t have any food restrictions as I do, but he still can’t keep his eye of the selection of goodies.
You can order special cakes and cupcakes for delivery via the website link below. I urge you to give it a try – you won’t regret it, I am certain of that! The staff are all so friendly and willing to help. It is such a joy to see the business flourish. I will be coming back for more!
Hello everybody, I know I’ve been quiet… my hope was that I started the year with a video of the spoken word I did quite a long time ago. It’s difficult to show you all what I mean when I say I paint through laughter so here is a video of it.
I finished five paintings last year, which was a real highlight for me. Before last year, I hadn’t been able to paint as much as I used to. I realised it was something I really missed. So I wrote this to describe what painting means to me and I hope to do many more in the future!