FMT and ME: Part Four what happened next?

For the longest of times, my body just felt like it was going downhill. Sometimes it plateaued but even then I felt like I was fighting to keep it level before eventually heading into a downward spiral again, again and again. However, over the last couple of years, things have changed for me, thanks to trialling a treatment called Faecal Microbiota Transplant.

 

 The simplest way for me to describe the overall way my body has been feeling, since embarking on this treatment path, is that I started to feel more like the Rebeccah I used to be. This sounds strange, even to myself, as it is not like I have never not been 'Rebeccah', but for at least the last decade I did not feel like myself physically or mentally. I have felt this change in my body, a sense of recovery, since starting FMT. If you haven’t read my other posts in the serious you might want to check these out first: FMT and ME: A Bit on the Side, FMT and ME: Why, FMT and ME: Part Two Trying To Fight Back and FMT and ME: Part Three Did It Work .

Fatigue/Energy

If you have read parts 1, 2 and 3 of my FMT and ME series you will see that I have made some physical improvements. But how has getting better physically manifested itself? How have any, some or all of my symptoms been affected?

 

Realistically it feels like quite a few of my symptoms have changed in a small way. The biggest thing that has changed is my energy levels - they have increased. Everything I usually do in my day-to-day life recently became a little easier some of the time. From sitting up in bed for longer periods, to coping with longer TV programs/films, to using the microwave, these things got easier.

 

Another important and hopefully permanent change was my delayed post-exertional-malaise (PEM). In my opinion, it is a key component to diagnosing M.E. and has a huge impact on all sufferer's lives. Other smaller symptoms (listed below) started to make improvements in July/August 2017 but I only found my PEM changing maybe a year on from then. I noticed the payback for things like being out of bed on the sofa for a little bit was still hitting me, but not as badly or for as long as before. I believe the improvement in this symptom is key to getting better. If this continues to improve then my quality of life should, fingers crossed, get better with it. Sadly, since initially writing the first draft of this blog post (now about two years ago) I saw this decrease again. I have to come to realise that I was still stuck in a very boom or bust way of life. My mindset had developed to always be pushing to my maximum. Not giving in so when I noticed improvements from the FMT, I pushed a little bit harder and I started to lose some progress and even see extra nerve pain return (although fast forward to now and I have got back on track, that is a story for another day)!

Other symptom Improvements

As I mentioned things were and are feeling easier now, but below are a few things I have noticed marked improvements in:

 

• Muscle Power: This increase in energy has also directly affected my muscles. They do not feel any stronger, but I do feel like the extra energy is being sent to them, processed more efficiently and being utilised by them, giving them much need power. For example, an action that occurs a lot for me is lifting and pouring a kettle. It still feels just as heavy but it is easier now. Also, on the odd occasion where I have had to navigate an incline or ledge, I can feel the start of a little more power flooding into my calf muscles to help propel me, which means the pain in my hips and thighs afterwards is lessened and hangs around for a shorter period. 
• Light sensitivity: I have noticed that I can cope for longer outside of my darkened bedroom and can occasionally take off my sunglasses for a few minutes when I am in a situation that doesn't have the curtains closed.
• Headaches: My headache pattern and pain is variable but the intensity of the more painful ones seems to have lessened. I still suffer from headaches but they are less frequent, and the average headache is less painful and easier to shift, usually just through rest and painkillers.
• Anxiety/stress: I have always had anxiety issues and was highly stressed even before I got ill, but I found my stress and anxiety, as with a lot of M.E. patients, got worse as I got worse. Initially, as I started to feel an increase in energy I felt a reduction in my anxiety levels. It was still there on a day-to-day basis at different levels, but it has calmed down overall. I started to feel more relaxed. I found my longed-for 'what will be with be' attitude becoming more and more insight. However, this improvement seemed to be short-lived and 2018 saw my anxiety and stress levels rocket again and I started suffering from low mood. I did manage to get my anxiety under enough control to start therapy sessions to help me deal with my mental health which I am managing over the phone. So I guess overall my anxiety has lowered a little. Although I still struggle with the physical and mental symptoms this creates daily,
• Car sickness: I cannot quite believe the difference in this one symptom, it has almost disappeared. I used to suffer on all car journeys. I could last about 5 minutes, sitting in the front, on a straight road before I started to feel nauseous. Now, as long as we avoid long winding roads my car sickness is kept at bay. As you can imagine this makes a huge difference to my rare trips out to doctors appointments! Due to this change, my neurological physiotherapist has been able to give me some inner ear exercises to help keep this symptom at bay. I find when I am overtired my car sickness comes back however if I keep practising the inner ear exercises they seem to help me even on the worst days in the car.
• Brain fog: Mentally is difficult to describe on paper and covers lots of aspects. I have seen an improvement in memory and concentration, allowing me to follow conversations better and watch films with less breaks! However another side of things I have seen improve is my sense of self. This is not depression or anxiety but a different side of mental health. 
• Sense of self: This side of things is deeply linked with energy production, yet it is often seen just as mental health. When you are chronically ill it can feel like the illness is trying to, and sometimes, succeeding in stripping away parts of you. The illness did not take away my passions, interests, or dreams (some got stronger), but it took away my ability to work towards or achieve them. I just did not realise that for me, being able to work towards something I am passionate about, was a huge part of my identity and personality. I was too unwell to realise this part of me was slowly being diminished. Growing up I had always been that person who knew exactly what they wanted to do, so having that ripped away from me so cruelly dented a part of my personality. With my body now feeling a bit better, my mind can start to focus on things that might make me happy, whether they be new interests, old passions, being more interactive within the chronic illness community online or communicating more regularly with my friends. When you do not feel like yourself, whether you realise this or not, it is hard to engage in ones own passions or dreams and join in with other people fully. This partially a protection mechanism but mostly the inability of the body to spare energy for that side of life, and quite frankly we live in a world where we aren't taught what to do if we cannot be constantly achieving things. Now I have some more energy, even in a small way, it, in turn, helps the mental side of things. The things that make me, me.

   

Treatment 

 How has this happened? At the end of 2016, I embarked on changing my gut bacteria via Faecal Microbiota Transplant, FMT, and have been continuing the treatment ever since. Have a look at my post 'FMT and ME: Part One Why?' to see more about the decision to embark on this treatment. As I started to feel stronger my wonderful M.E. doctor (who constantly has new things to try and is the one who pointed me in the direction of FMT) started me on a new therapy called low-dose-naltrexone. This works for some people and not for others. In combination with the gut bacteria treatment, I have found it immensely helpful in overall pain levels, stomach pain and general energy levels. I still take this daily and it has had a positive long term effect on my health.

Moving Forward

 In October 2019 I did an FMT that saw the least side effects I have ever had and the initial benefits kicked in sooner. However, as I mentioned already, I realised that my situation was worsening again. I was still stuck in my boom and bust cycle. I do believe the FMT was the way forward to helo me and had gone some way into putting my body into a recovery mode but I was abusing it. Clearly, on its own, it is not going to be the thing that dramatically improves my situation, but I had this deep feeling within in me that if I stop pushing against my body and start pacing, that the two things combined could make a real difference. It would not be honest of me to say that I am not incredibly cross with myself for not realising this sooner. I thought I was getting good at pacing but I realised I am not. And this had to change. So in January 2020 I took the very brave step to reign myself in and stop bringing myself to the point of exhaustion. I am sick of not achieving anything but surviving. I stripped everything right back and worked out what my baseline is. I established what I can do daily without flaring up my symptoms. My body started to build energy reserves and start to heal itself so that I can slowly build up activity levels. Previously to 2020, my whole lifestyle was geared up to be able to leave the house once every 10 days or so. However, I was then worn out and when I had barely recovered from the previous outing I use up any energy I had gained to go out again. The sad thing is I rarely enjoyed my couple of hours of the house, as I was not well enough to be out. I am very lucky that the doctors and medical professionals around me also saw my pacing plan as a good idea and are supporting my decision. I have had some negative push back from those around me but one of the main reasons I have never done this before is because I'm always trying to meet other peoples expectations of me, especially those who fully do not understand or accept my illness see pacing as a negative. And yes, I am a people pleaser, but I am working on that.

New Diagnosis 

Another factor in this decision to try properly pacing is through a new diagnosis of Osteopenia (the pre-cursor to Osteoporosis), which is not great news at all. To reverse this, I need to not only take extra supplements but increase weight-bearing activities even such as being able to walk or stand for longer. I currently only manage between one hour and one hour and a half (broken up) throughout the day out of bed and if I want to increase this I need to build up some energy reserves. I know that by establishing a baseline I will be able to increase weight-bearing activity slowly. If I tried to do it within my boom and bust lifestyle I will cause myself to relapse.

What's next

At the time of writing the first draft of this piece, I had everything crossed that the difference I have noticed in my symptoms will be cemented and continue to improve with the implementation of real, proper pacing alongside continued FMT treatment. I will also be strict with myself and make sure I do my FMT treatments when I need them and not let other things take priority. I will ensure I have the energy for them. I fully believe that for me these are the key to improving my health. I am sad that I have finally had to admit that I'm not going to suddenly wake up 100% better and frustrated I did not realise sooner that I was still booming and busting. However, this realisation, acceptance and scary diagnosis of Osteopenia has made me see clearly that I should have tried real pacing alongside the treatment in the first place. I am trying not to dwell on this as I am one of few people that have tried FMT for M.E. and I am even ahead of a UK clinical trial that is going to begin soon at The Quadram Institue in Norwich, so I have had to do this largely on my own and develop my own treatment plan. It is no wonder I have made many mistakes along the way. 

For me the FMT has absolutely worked in reducing some symptoms, and I have only covered a few obvious ones here, and at the time of publishing this (April 2021), I am still doing FMT at home, although less regularly, and I have no doubt they have helped me personally. Some symptoms have stayed away and any relief from this horrendous illness is worth having!

The next part of my journey has been and is tough, physically and mentally, but highly beneficial. So please wish me luck and support and fingers crossed I can find a way to fit blogging into my baseline activity level to let you know how I am getting on!

(Number of FMTs December 2016 - April 2021: clinic + at home FMTs = 52/ at home FMTs = 43)

Other Posts in FMT and ME Series
FMT and ME: A Bit on the Side

FMT and ME: Why
FMT and ME: Part Two Trying To Fight Back
FMT and ME: Part Three Did It Work

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I am not a medical professional and nothing here can be taken as medical or health advice, so check with your doctor before following any information in my blog.

Everyman Cinema Horsham

I really enjoy going to the cinema but it is something I find incredibly difficult since becoming ill so my visits are few and far between. However, after a restful couple of weeks, I fancied trying out the new Everyman Cinema in Horsham. I had been to one a few years ago and was desperate to go to one closer to home! Luckily for me, there was something on at the cinema I wanted to see which coincided with being well enough so Mum and I booked tickets the day before and headed off to see the new Downton Abbey film.

Accessibility

The cinema is located in a pedestrianised Square and accessed through large glass doors. These are not overly disabled friendly as they are very heavy and require someone to help you open the doors if you’re in a wheelchair or not very strong. There does not appear to be an electronic mechanism for the door or a way to notify staff you are there if you are alone and cannot open the doors yourself. Once inside you enter into a small smart vestibule with a staircase and a lift that takes you up to the main floor of the cinema.

You pick up your tickets and order your refreshments from the bar. The whole set up of the place is designed to be more like a restaurant/bar than a cinema foyer, which gives it an exclusive, fun atmosphere. However, there is no wheelchair-accessible counter so you have to strain your neck to talk to the staff if you are in a wheelchair.

The disabled loo is large, clean and smart. It is located to the right of the bar which is the opposite side of the building to the cinema screens. It is important to note that these are the only lavatories, so it is advisable to use them before going up in the second lift and going to your screen.

You access the cinema screens in a second smaller disabled lift, which fits a large wheelchair and another person. There are three screens and all are accessible and have wheelchair specific seating. The seating along the top row, as you enter the screen, has step-free access and is located at the top of the cinema steps so your disabled seating always gets fantastic views, whether you stay in your wheelchair or transfer out of it onto the sofas.  If you are able to do a few steps, and want to access other seats in the cinema, the steps are wide and shallow. The staff are very helpful and guide you to your seat. They will safely stowaway your wheelchair if you transfer out of it. It is also brilliant that the staff will bring any food and drink you order when picking up your tickets to your seat during the film adverts, meaning you do not have to balance anything on your lap while in your wheelchair.

Score: 7/10 - pretty good but have not thought out disability needs fully
Why: The main doors into the cinema were not very accessible, there was no wheelchair-friendly ticket desk and the disabled loos were not close to the cinema screens at all. There is detailed access information online. There are, however, lots of staff to help you if you need it once in the building.

Booking Tickets

While you can book non-transferable wheelchair tickets online you cannot take advantage of your carer getting in for free if you have a CEA card online. Everyman, unlike other big cinema chains, do not have a mechanism to put in your CEA number to buy your disabled tickets online. This is incredibly frustrating when you know it can be done on other websites. They direct you to call a customer service line 01233 504815 if you want disabled tickets (unlike their normal booking line they do not charge you extortionate rates to call up to buy disabled tickets). The operators are very friendly and helpful.  They will help you choose appropriate seats and take down your name, email address and CEA card number. You cannot pay over the phone but they will block the tickets off for you. When you get to the cinema itself, when picking up your tickets, make sure you say that you have a CEA card and show it to them or they will try and charge you full price for both tickets. They may have to ask a manager to come over and help them. The only advantage of this way is that you do not have to pay the booking fee which you would usually have to do if you book online or call up to buy tickets without a CEA card.

Score: 4/10 - I expect better
Why: When there are the cinemas that can provide an online booking service for disabled patrons, it is incredibly annoying and time-consuming not being able to go online and just book the tickets yourself, especially if you have to wait for somebody to help you make the phone call. All the points I allocated them really come for the fact that they are helpful on the phone and that you do not have to pay to use a premium telephone line or pay a ticket booking fee.

Food

The menu is small but features cinema favourites such as popcorn but also cooked meals, which can be served to your seat during the pre-film adverts. We both went for the burgers and they were easily accommodating to both of our allergies. My mum was able to swap out the chips for sweet potato and I was served a bunless patty with chips, a salad and guacamole. My burger and chips were coeliac safe and although all dairy-free, the chips had a risk of cross-contamination with dairy (that's a new one on me). Thankfully I can cope with possible traces of milk but something to watch out for if your dairy allergy is as bad as my gluten allergy! Mum was also able to indulge in a glass of wince and I was able to have a fresh mint tea served to my seat. The hot drink came with a mini Green & Blacks chocolate bar which I had to give over to my mum, but it was a nice touch rather than having to buy great big bags of normal cinema confectionary to satisfy the sweet tooth. 

Mint tea & chocolate bar on my side table

I had emailed the cinema previously to find out about their allergy policies and they kindly emailed me back with all the gluten-free options which I have included below, but please check when you are ordering to prevent the risk of cross-contamination etc. I wasn't sure how I would enjoy having a full meal in the cinema but it worked really well. I also thought the value for money was quite good and a burger and chips were about the same price as a lot of burger restaurants.

Score: 9/10 - Pretty darn good
Why: It would be very easy for the cinema to stock gluten-free burger buns and no restaurant has ever told me I cannot have the chips because they made have a risk of dairy traces, but I am very pleased they were suitable for coeliacs. Also, as I had highlighted I was dairy-free, a dairy-free Green & Blacks mini bar would have been thoughtful and not that hard to make available.

Email response to Gluten-Free Options

My Actual Experience

Everyman is always going to be my first choice for a cinema experience. The sofas and armchairs are supremely comfortable. The cinemas are intimate and have the feel of a private luxury club. The tickets were a similar price as what you pay for the Odeon in Guildford, so value for money is great. The in-cinema food really enhanced my trip out as a chronically ill patron as it meant I could enjoy a meal out and a film. I loved the intimate feel of the cinema. The staff had great customer service skills. I also enjoyed the buzz of the cinema when leaving in the evening. The bar area and outside terrace was full of people enjoying cocktails and food either before or after a film and even people just enjoying the place without seeing a film at all. The cinema was clean, comfortable and a much lovelier experience than I've had before at regular cinema chains in the UK.

Score: 8/10 - Great
Why: It will be my first choice of cinema due to all of the positives. If they could improve the booking experience for disabled patrons and tweak the allergen options that would make the experience fantastic. The position of the lavatories is not ideal but I'm not sure the layout could really be changed to accommodate a second disabled loo. They should have consulted disabled patrons before designing the cinema, but it is very rare that any commercial ventures actually consult a disabled person. They desperately need to improve the access to the building to make the entrance doors disabled accessible, because if you cannot get in then the rest of the access inside is a bit redundant.