Tuesday, 13 April 2021

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 SideFMT and ME: WhyFMT 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

 ***
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.



Friday, 15 November 2019

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.

Saturday, 12 October 2019

A review of Sanditon: My Thoughts on The Acting and Production



If you were to ask me what my all-time favourite TV series is I would not even need to think about it. Without a shadow of a doubt, it is Andrew Davies' 1995 adaptation of Pride and Prejudice, starring Jennifer Ehle and Colin Firth. I can watch it over and over again because the acting and production is just so fantastic. So, when I heard last March, that Andrew Davies' latest adaptation of an Austen story was being filmed, I could not wait to see what was in store.

Okay, confession time, I am a Jane Austen fan but I never knew about Sanditon. I had no idea it was an unfinished novel of Austen's. I could not even tell you what it was about until it lit up my TV screens recently. I did not want to research it before I watched it as this was a unique opportunity to watch an Austen drama without knowing the plot. I had no doubt it would be good. Davies always creates wonderful TV and when it comes to Austen he is the master. I would like to think that if Jane Austen had been reincarnated it would be as another woman, but sometimes I wonder has Austen come to life again as Andrew Davies? Of course I jest, but he seems to know her mind inside and out!
https://www.instagram.com/sanditon_official/

Most of Austen's novels are not named after where they are set, but this one is. Sanditon is the name the of the seaside resort, that we are introduced to through the eyes of our heroine Miss Charlotte Heywood. The screenplay has been produced so that Sanditon becomes a character in itself. We get to know Sanditon through our main female protagonist. She is plucked from her humble farm life by an enthusiastic Mr Tom Parker, the visionary behind turning Sanditon into a fabulous, glamorous and well-to-do destination resort. Tom Parker is wonderfully embodied by Kris Marshall who brings delight and passion to his character while showing an underbelly of insecurity. Marshall's comic timing, with the character's whimsy and wonder, allows the viewer to experience his passion and feel his failings. Tom Parker's likeability allows the audience to believe that Miss Heywood's parents could allow her to go off with strangers to a new place. However, in contradiction to the time period or other Austen novels, there is no intention that she should find herself a husband in Sanditon, but her father leaves her with a few words of caution about her destination. Quite rightly so, as maybe she is too innocent to see the dangers for herself, but her self-confidence, however, gives her a strength to not fall foul to all the manipulation that may be at play. Like Heywood, we as the viewer, have never come across an Austen town quite like this. The characters are edgy and there is more grit than we are used to. Austen always has undertones but this is a little closer to the mark and yet does not seem out of place. The seaside brings a bit of wildness and a little less formality that gives the characters more chance to break from societal demands. Through the setting, in particular, we can see our female characters have more to them then just relying on marriage to secure their futures.

There are many characters in this story and produced badly it could become too fragmented. Luckily this is not the case, Charlotte Heywood may be the lynchpin to the story, but we do care enough about other characters predicaments to indulge in their storylines that become separate from our heroine, which is something that is not often present in Austen's work. In her writing, usually, the main female and her male romantic interest are fully formed people with multiple characteristics and everybody else around them presenting as rather two dimensional. This is simply not the case in this Austen adaptation. It is the complexity of many of the characters in Sanditon that makes it feel more like an ensemble piece.

Quote from Radio Times Interview
Nevertheless Rose Williams, who plays Charlotte, brightly shines among her eminent colleagues. Williams is not new to our screens but will be unheard of to many of the audience. She is acting with some very experienced actors so could easily be overshone by them. However, she embodies her character to the core. No matter how much you are drawn into the other storylines, as soon as she is back on the screen you just want to follow her story. Miss Heywood is a young woman with little experience of anything outside of rural life. It would be easy for an actress to play this character as though she were just a naive girl, with wide eyes making ignorant remarks, but I do not think we can attribute these qualities to her. Williams manages to show us Charlotte's innocence alongside a certainty of knowing who she is and claiming her independence. She is intelligent and although she lacks experience of the world around her, she is not afraid to learn. She always owns her opinions, and mistakes, no matter who or what she comes up against. She is very quick to set the record straight that is not in want of a husband and we, as the audience, fully believe her and move on to examine her other qualities and the intrigue into where her story might lead. Of course, she is confronted with the inevitable rich, handsome gentleman, Mr Sidney Parker, who cannot help but try to make her feel small. However, like Bennett and Darcey in Pride and Prejudice, they are inexplicably drawn to one another. Parker and Heywood's interactions are compelling and leave us desperate to see them together more.

 They are drawn together like a magnet. Sidney is performed by Theo James who gives a stellar performance as the arrogant and mysterious gentleman who challenges Charlotte. It would be easy for his character to just be seen as rude and demeaning, however, we also see that perhaps there is another side to him. While James cleverly portrays the character's rudeness though his tone and manner towards his co-star’s character, his eyes tell us a different story. James invites the audience in to see that there is something deeper going on for his character. Through his eyes we can see a conflict between what he is saying and what his true emotions are, perhaps alluding to something in his past that is informing his present in a way he wishes it would not. James' subtle contradiction between his words and his inner thoughts clearly shows his complexity of feelings and hints to us that Sidney and Charlotte may become more than just two people who irritate each other? The question is, do we want the predictable romance to happen between the characters? Charlotte has no pressure to marry and we are presented with another possible love interest for her. Unlike other Austen novels, the second suitor Young Stringer is brilliantly, earnestly and honestly played by Leo Suter, is not absurd or horrific but a lovely and ambitious man who is closer to Charlotte in station. In some episodes, I could not decide which male actor would make the best romantic partner for her as Suter's portrayal of his characters heart on sleeve feelings for Charlotte were glorious to watch. Charlotte's lightness, kindness, outspokenness and intelligence are definitely a draw to both men in different ways. She compliments one and challenges another. Or, perhaps, as the feminist in me would like, she will end up with neither?

The cast as a whole really do excel and are very generous actors. By which I mean, they play their characters in earnest, even our more comedic and evil characters add to the charm of Sanditon beautifully. The step-brother and sister duo played by Jack Fox and Charlotte Spencer reminds me of the siblings Mary and Henry Crawford in Mansfield Park. Both of these sets are evil, shallow, manipulative but beautiful and charming. However, Davies has developed the Denham duo to become deeper than initial impressions. Fox and Spencer leap on this scripting opportunity and ask the audience to see a different side to them. Despite their manipulations, especially Esther Denham, their depth of character starts to unravel. Spencer brings a sense of sadness and desperation to her character. The director uses this to lead the audience away from the stereotypical evil nature we expect to see within this story format. It is safe to say that Spencer gives fantastic characterisation for others to bounce off in this production, but so do the rest of the cast. They all give a lot to their fellow actors allowing Sanditon to really dazzle as a period drama. No one person steals the show completely. It is well cast. However, I would be remiss not to mention Rose Williams one more time. Her characterisation of Miss Heywood is the key to us enjoying and engaging with this story. Played too naive, we would find her irritating and unable to see the other characters in their true lights. Her manner and brilliant facial expressions reflect her confusion at the responses and situations thrown at her, allow the viewer to care and fully engage in the story. Williams masterly combines Charlotte's inner conflict of natural confidence versus her inexperience of the wider world, to give us an Austen heroine that speaks to us in the twenty-first century. She is the kind of female character we need to bee seeing more of and Rose Williams brings Austen's and Davies' words to life quite wonderfully.

Wednesday, 2 October 2019

FMT and M.E: Part Three Did it work?


This is the third instalment detailing my FMT journey. It follows on from my blog post Trying To Fight Back. It spans the second six months of my FMT treatment plan. It has its ups and downs but it is a little less of a rollercoaster ride physically and mentally than documented in my previous two posts. I hope what I have written continues to be helpful to anyone considering or experiencing FMT, as there is still precious little information available about what happens to M.E. patients and their symptoms when they embark on Faecal Microbiota Transplant.

(Number of FMTs December 2016 - June 2017: clinic + at home FMTs = 18 / at home FMTs = 9)


July - August 2017: So, did it really work?

BINGO! After a rocky six months, I finally felt like things had settled down. Mum continued administering my FMT at home. I could now go three weeks between implants before my improvement started to dip. I needed one week to get over each implant and had to deal with multiple symptoms including low mood, dyspepsia, sickness, even more inflammation of the gut and weakness but then generally I experienced two weeks of feeling a bit better. By FMT 10 (the amount I had done at home) and at the end of July I felt I had increased my energy levels by another 1%. So a total of 2% energy increase since December 2016, a reduction in light sensitivity, lower pain levels generally and a decrease in the severity of my headaches. I cannot describe how pleased with the progress I was. After 10 to 11 years of going downhill, with no cure on the horizon, this was akin to a miracle for me and my family.

By August these improvements in my energy, reduction in headaches and general muscle pains were fully cemented and I was less scared that it was just a fluke. I was convinced the FMT was working.

I had noticed a difference in how my body was feeling since the very start of my illness in 2006, even compared to the better times in previous years, when I had felt like my body was fighting to stay on a level playing field, holding itself up by a tiny thread. I had constantly felt like my body was fighting a losing battle against the deterioration that had been slowly occurring and had led my specialist putting me into the severe bracket of M.E. rather than the moderate-to-severe. In August I realised I no longer felt like I was trying to climb a nearly vertical slope. Perhaps this is the feeling of recovery? I don't know. All I know is my body felt different from how it ever had done since I first got struck down by glandular fever.


September/October 2017

We decided to try a holiday abroad at the end of August as my body had stabilised. I was not well enough to fly so we opted to take the overnight ferry to St Malo in France, and drive down to Concarneau to try and catch some hotter weather.





It was lovely to be away but sadly the 10-day break, the long drives and ferry trips left me feeling worse then I had accounted for. I did not recover well, in fact, I felt like I was deteriorating again rather than just needing extra long rest periods. I tried to go out a few weeks later but I had to cancel as all my symptoms were sadly worse than they were pre-holiday, even with doing 2FMTs during this time. I could feel my progress slipping between my fingers. It took me over a month to recover from my trip and I had experienced no positive results from an implant since July. I stubbornly tried another implant in mid-October determined not to let the last year be a waste of time and money.




Luckily for me felt like all my birthdays had come at once, as after the initial side-effects had died down, I felt an increase in energy and my body had the ability to recover from its post-holiday dip. My next treatment at the end of October gave me another boost just in time for a very special event!


November 2017 coping

Wow! I could not quite believe it at the time but I was well enough to attend a large evening party with a light, sound and lots of people for my dad's 60th birthday. I was very strict of course and scheduled extra rest for the weeks before and after the party. I was taking every precaution possible to not only protect my precious progress but also make it to the party.





I had a wonderful time and even did a speech. I was feeling up to continuing tradition, since about the age of five, that I am often the member of the family called upon to make speeches at all sorts of family events.

Much to my shock, apart from the expected immediate fallout, I coped very well at the event and it did not cause a full-blown relapse after the initial few weeks of recovery. I certainly would have struggled downhill if I had attended an event like this prior to going to the Taymount clinic. Things seemed to be continuing on the upward trajectory again!


31st December 2017 - An Excerpt from my FMT Diary

‘So, last week I did my final FMT of 2017. I cannot believe that it is just over a year to the day from when I headed on up to the Taymount Clinic, freezing cold, tired and overwrought from nerves to have my first implant. I am so grateful that the FMT I have just had has given me enough of a boost that celebrating Christmas has not affected me as much as it has done in the past. I am worn out but I do not feel like someone’s about to push me down a dark tunnel of a dreaded relapse.



I am off to Center Parts with Mum in a few days for a mini-break and although there is always a risk of it being the final straw, I really feel strong enough that I do not think it will cause a relapse. I hope in mid-January when I am writing in this little book I will confirm this belief. Most people can’t see my improvement over the last year. It is small in the scheme of things. It is hard to explain how I feel, and most people still don't really get that just sitting up in bed a little more often to watch TV, rather than lying down is a big deal for me. But it doesn't really matter what they think or the look of disappointment on their faces that I'm not cured or not out of my wheelchair- that is their issue, not mine, and I am so proud of how far I have come in the last year. It has not been easy and I have wanted to give up a lot, especially during the relapse periods in the first six months. My bank account has also seen much happier days but its worth every single penny I have scraped together to pay for it and so much more. So, year twenty-seventeen you have been an interesting one for sure and I am so glad that I have ended you better than I started, I hope the new year continues as well as this one has ended.’




View of the lake from Center Parcs apartment


(Number of FMTs December 2016 - January 2018: clinic + at home FMTs = 25 / at home FMTs = 16)


2018: Looking Forward and Looking Back

If you have made it to the end of this blog post I commend you as it is the third part of my FMT treatment plan. It has taken me many months to write but I really wanted to continue to document my journey publically as to just how Faecal Microbiota Treatment has affected my M.E. Initially I told very few people I was having this treatment when I went to the clinic because I was so nervous about it that I didn't want to answer questions, or have everyone waiting with baited breath when I got back to see if it had cured me. Frustratingly, I did have to deal with the surprise from people that knew I was doing it that I only had negative side effects straight away. There were some comments thrown around by some people about my attitude after the first few days at the clinic. They thought I was being negative in explaining how awful it all made me feel and, from others, confusion further down the line as to why I was carrying on when I had only experienced, in their eyes, no visible improvement. I think that the first year of treatment has shown that my body isn’t going to bounce back quickly. I have got a devastating long term chronic illness, no treatment currently available is going to fix all the problems it will of caused in my body overnight, no matter how much I want it too. Before I went to the clinic I decided that I was going to commit to trying FMT for the whole of 2017 and then I would choose my next steps based on that. It has been an easy choice. I have continued on with my treatment for the whole of 2018 and now when this will be published in 2019, with a little input from my M.E. specialist, I have found a balance that where possible having at home implants every 5 weeks is the way to continue. However, it is sometimes longer due to health flares, commitments, and financial pressure. This seems to feel right for my continued improvement or stopping me from relapsing depending on what has been going on that month. I think from documenting this journey it is clear that I suffer from side-effects straight after for a few days and then usually see improvements in my energy levels, but there are bad times too and it is safe to say these continued over 2018 and 2019. As I said in part one of this blog it was ‘a bumpy ride with some positive results’!

Thank you so much for taking the time to read this. I hope if you are thinking of embarking on an FMT protocol at the Taymount Clinic (or elsewhere) for M.E. it has given you some and hope and insight into what you might expect to happen.

Please feel free to privately contact me on my blog or message me on social media accounts which I will link at the bottom, and I will endeavor to answer any questions.

 Keep a lookout for the next installment where I discuss milestone moments and symptoms in particular that have improved from my FMT treatment over the last two or so years.


Instagram

@creating_rebeccah


Other Posts in FMT and ME Series:

FMT and ME: A Bit on the Side

FMT and M.E. Part One: Why

FMT and M.E. Part Two: Trying to Fight Back

FMT and M.E. Part Three: Where Do I Go From Here

***

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.

Saturday, 27 July 2019

An Oasis of Calm at West Dean Gardens



When I was a child my mum would often take my brother and I off on adventure days. Essentially mum would pop us in the car with a picnic and pick a general area to head to and just drive. We used to have great fun exploring new places and coming across things that we never would have found if we were planning to go somewhere specific. We all loved these days and they are some of my favourite childhood memories. Unfortunately being chronically ill and disabled means these exploring days are not as easy as they used to be. Firstly, I need to be well enough to actually cope with going further than usual in the car, and secondly, most places are not easily accessible in a wheelchair (even when they say they are).  However, we decided that as it would be good weather for the first May Bank Holiday weekend, we would try an M.E. friendly adventure day i.e. travel a bit further afield but with an end destination in mind that had been recommended to us and had been able to research if it was disabled-friendly.

So on a Sunday morning last summer, with a loose plan in place, I woke up feeling strong enough for an adventure and to top it off the sky was fabulously blue and filled with beautiful sunshine. We set off when we were ready (no pressure is key to these days) and headed off down to West Dean Gardens in West Sussex, near Chichester.




West Dean Gardens
After managing to avoid too much traffic we arrived to find several disabled spaces opposite the entrance, and although they were full, there was some other close parking right next to them that we were able to park in and it was a flat surface meaning there was no awful gravel to try and push the wheelchair through! Parking for everyone is complimentary (unlike some places these days).

A short pathway under beautiful blossom trees led to a step-free entrance with the cafe to the right and the shop and garden entrance to the left. You can enjoy the cafe and the shop without having to pay the garden entrance fee. There is also a disabled loo in the shop which is very handy and was kept very clean. Tickets are bought in the shop for £9.50 for an adult and a carer can get in for free.

We crossed over on a flat path into a beautiful oasis. As it was about 1pm lunch was definitely in order. So we settled down to have our picnic on a sun-dappled bench on the outskirts of the picnic lawn. Dotted around the picnic lawn were several wooden tables with proper chairs that were occupied by some people having lavish picnics with tablecloths and crockery and others with a more simple fair. There were also trees surrounded by wildflowers that provided plenty of shade for those who were picnicking on the floor. We could see the sheep roaming in the hills and admire the beautiful sight and smell of the patch-work quilt of flowers all around us.

There are many sections to the gardens, most of which are suitable for wheelchairs, and only small gentle inclines, meaning whoever is pushing the wheelchair doesn't have to work too hard. There are also many benches and chairs dotted around the whole garden encouraging visitors to take some time to enjoy the wonderful surroundings.

My Favourite Parts 
I really enjoyed the kitchen walled gardens, particularly the beautiful Victorian glasshouses. Garden-goers are allowed to go into these, however, they were not wheelchair accessible. I did enjoy looking through the doors and seeing a wealth of plants from lettuces to exotic vines, flowers and fruits! I also loved being pushed around the little pathways and bridges around the stream in the Spring Gardens Area. Rolling alongside the babbling brook in the cool shade with a multitude of different plants lining the river and walkway was incredibly calming. I felt at peace here. So much so we even laid out our picnic rug and had a quiet rest on the cool ground surrounded by thousands of little daisies, watching the pairs of ducks fishing in the stream and drifting along with the tide.



Refreshments
After a couple of hours in the gardens it was still stunning weather, so before a quick mooch around the shop, we decided to refuel before the journey home. They have a lovely terrace, with large parasols, that is accessible through the main cafe and down a small ramp to make it easy for any level of disability. They make lots of the food themselves and use what they can from their kitchen gardens. I had a fresh mint tea, which was chockablock full of the most delicious smelling mint. The scones to the salads to the cooked meals all looked delicious. They had a large array of mouth-watering cakes. For allergies they had gluten-free bread for sandwiches, baked potatoes with multiple toppings, a gluten-free carrot cake and a packaged gluten and dairy-free chocolate brownie. By now I was exhausted, but propped up on a folded up blanket (provided for guests of the cafe) and my own cushions on the wooden chairs, I felt very contented in the warm sunshine. It was a joy to watch the lambs playing in the closest field and people strolling happily across the gardens.

In Conclusion
It is rare, especially when I am out, I reach a place where I can detach from my symptoms but as soon as we entered the gardens it was just an oasis of calm, peace and I could truly be in the moment. I cannot recommend this place highly enough. Not only for the beautiful environment but for really great accessibility. If you are anywhere near West Dean Gardens and the weather is warm it is somewhere you must visit, and it is suitable for anyone!


www.westdean.org.uk/gardens
West Dean Gardens
West Dean
Nr Chichester
West Sussex
PO18 0RX

(This article was originally published in the Sussex & Kent ME/CFS Society Newsletter Summer 2019)

Thursday, 2 May 2019

FMT and ME: Part Two Trying to fight back



This post is the second instalment of my FMT journey. It follows on from my initial blog post-FMT and Me: Part One Why?. It spans quite a turbulent period in my health physically and mentally which has been tricky to write about without re-opening too many old wounds. I hope what I have written below is informative and helpful, as I could not really find any information online about what happened to their M.E. symptoms during and after FMT treatment.


Immediate and ongoing side-effects

I will start by explaining a bit about the immediate and longer-term side effects from each time I did/do an FMT.

Some people experience an immediate boost in energy and a lessening of symptoms a couple of hours after their FMT implants, sadly I did not. I suffered quite badly after each of the initial implants at the clinic and continued to experience unwelcome side effects after each at-home treatment too. I have listed a lot of the severe and immediate symptoms I suffered below:




I had 9 implants at the clinic and at the time of starting to write this blog post 19 at-home treatments administered by my mum. However most of the worst side effects (as above) have now lessened, and now I only really suffer straight away from excessive bloating, a small amount of cramping, fatigue with a bit of shivering thrown in and 5 to 7 days of exacerbated nausea, extra bloating and very low mood.


December 2016: At the clinic
My initial treatment plan was as follows:
Colon Hydrotherapy/Irrigation
5 transplants over 5 days
10 days rest
4 transplants over 4 days


I did experience a lot of side effects which only worsened after every day of treatment. I was required to stay away from home in a hotel during both sets of transplants for a while which naturally made my M.E. worse. I am also not used to having to leave my bed, get dressed and go out every day, so my pain and fatigue increased massively as well as my other symptoms. I am sure this contributed to the overall severity of my reaction to the FMT treatment. The symptoms that were exacerbated the most were as follows:


  • Longer periods of excessive bloating
  • increased dyspepsia
  • painful trapped gas up into my chest and shoulders
  • dizziness increased
  • nausea exacerbated
  • extra weakness
  • disorientation
  • faintness, weakness and dizziness increasing in the evening
  • inner ear symptoms making me feel like I was on a ferry on a very rocky seas
  • extreme agitation, distress, depression: resulting in random outbreaks of increased crying. I was well aware of the gut-brain axis and how the microbiome directly affect mood but nothing could have prepared me for just how badly a disruption in my gut, with the new bacteria trying to populate it and fight off any unwanted bacteria, would leave me completely mentally out of whack (mindfulness does not cut it in these instances)



January - February 2018: Initial Reactions
I never expected the first few weeks after the initial treatment to be easy and it was not. My body needed time to recover after the strain of going to the clinic and my gut felt like it was in shock whilst an epic war of different bacterial species raged within me.

A few weeks after my treatment, the twenty-third day into January to be precise, I had pushed myself to go downstairs and watch 15 minutes of TV on the sofa and I had the strangest feeling. It is hard to describe as it was a mixture of many different emotions. I felt at peace, ecstatic, clear-headed, pain-free and light all at once. It felt like I was having an out of body experience for about five minutes. Then suddenly I felt extremely odd, and not in a good way, and all my M.E. symptoms came crashing down over me like a wave followed by a swell of hysterical, desperate crying. I now know that the almost indescribable first five minutes is what people with M.E. describe as the ’moment’. It is something I have heard about it on the grapevine and directly from people have experienced it. It was very brief, but just for a moment, it felt like all the wires in a circuit were connected perfectly. Unfortunately, and rather too quickly, it felt like someone came along and tangled up all the wires up again putting me back into my normal state. It was utterly exhausting as it had zapped any little energy I had before it had happened. At the time I was confused and distraught. However, the next day, I was hopeful that this moment I experienced might be a signal that maybe my body was ready to start recovering? Was it too soon to hope that something was changing after all these years?

As the weeks went by I was still experiencing side-effects from my initial treatment and my extremely sensitive stomach was becoming more unresponsive to my usual medication and even my safe foods were irritating my stomach more than usual. Alongside this, my initial low mood and feelings of agitation became even worse. To the point where I would describe my feelings as a deep gut-wrenching loneliness and despair. The only way I fought my way through these feelings was being able to reason it out and hang it on my gut microbiome still being up in the air. I hoped that when it settled down my mood would change for the better.
There was a little ray of sunshine poking through the bleakness though. Both my mum and I noticed that my headaches had decreased in occurrence and sometimes were not quite as bad. Not only has having less pain come as a relief, but it also meant that I have been able to tolerate little bits of extra light better over my whole body and eyes.



When you have a chronic illness though nothing is straight forward and my body began a backlash. I started to spiral into a relapse. I noticed the warning signs from multiple other past relapses and I knew what to do to try to ward it off. Thankfully my headaches stayed at their improved level but I became even more fatigued. I could not even tolerate my usual weekly massages, my bladder pain seriously increased and my glands swelled up more than usual. At this point I cleared everything in my diary, trips out, visitors, things I wanted to do at home, any admin, anything, even limited my tv time down even further. I was doing everything I could to avoid my illness becoming even worse.


March and April 2017: Experimenting

Despite my precautions I just kept deteriorating. Then my body clock flipped and I couldn’t get more than a couple of hours sleep at night, at best, and I was in too much pain to sleep in the day. That is when my mum took charge. I had bought several FMTs back from the clinic, stored in the freezer, ready to use, so mum said what have we got to lose by trying one now? I had hoped to have my first one in about April when I felt strong and stable. I did not feel strong or stable. I was reluctant. But mum went based on the evidence that before I started to relapse my headaches had improved and I had the ’moment’. It was worth a try… and I needed to do something to stop my spiralling symptoms.
 
So on 4th March 2017, we did my first FMT at home. For several days afterwards I had all the side-effects I had at the clinic, and it drained my energy even further. I was worried that the downturn in symptoms had turned into a long term relapse. However after a few days, I woke up and I hadn’t gone downhill any further, another day passed and I felt the same as I had the day before. So one week after my first at-home treatment we did another one. Yes, I had side-effects from the actual implant and incredible weakness for 24 hours after but my overall state of health had not got worse. Finally, months after going to the Taymount Clinic I felt my body had stabilised itself. The roller coaster ride and paused. I could catch my breath. I was relieved but still suffering in a deteriorated state of health. I could not cope with much stimulation and still struggled to leave the house. I then decided to do three more implants spread over the rest of March and April as I felt that too long in between would lead to my body going downhill again.


May 2017: My Treatment Plan
Then, after number 6, both my mum and I noticed that I seemed to have an increase in my stamina. It was very minute. If I had to put a figure on it I would say perhaps a 1% increase. I know this sounds negligible but when you have spent the best part of a decade getting more and more unwell this really feels like a huge improvement to my quality of life. I observed that I was able to sit up in bed for slightly longer periods of time and lying on the sofa occasionally was a tiny bit less exhausting. Although some days were still as bad as they had been before I had gone to the Taymount clinic, I was very quietly pleased with the progress I was experiencing some days and it gave me the courage to continue with my treatment plan. I was so confident in my progress I could start to structure my day again. I could start to add in slow gentle stretches lying in bed after I woke up and several periods of planned mindful meditation throughout the day. Or so I thought. This increase in activity caused muscular strain. I developed extreme pain in my QL muscles on my right side causing me to only be able to lie on my right side day and night for three weeks barely leaving the bed (only to use the bathroom). Sound and light sensitivity got worse again because my body was using all its energy and resources to cope with the pain. Eventually, when I had regained some strength, I made it to see my chiropractor for several sessions and thank goodness he sorted out the pain for me. May had started off well but ended in a bit of a mess and the most frustrating thing was I could not have my FMT during this time so I felt my newly stabilised body and 1% energy increase slipping away from me.



June 2017: Hanging-on
I refused to let the end of May and beginning of June stop me from making the most of my FMT treatment. I said that no matter what I would try and use it to get better for the whole of 2017 before I assessed whether it had helped and if it was worth continuing. So by mid-June I was up to 10 at home transplants and my increased 1% energy was less sporadic. Most days I felt I had extra energy and a slight decrease in pain levels in my body allowing me to start lying on the sofa regularly once a week and occasionally sitting in a comfortable chair for a little bit. The best bit was after I had done these things I did not feel like death afterwards.
Physically I had improved. But mentally things had taken a turn for the worse. If anyone needed living proof that gut bacteria affects mental health, I am your girl. Not only after every implant so far had I experienced a huge dip in mood for a week and heightened anxiety, in June it got a lot of worse. I started to cry for most of the day, for days on end. It would not be long after I would wake up that the distress and tears would start and pretty much carry on for most of the day. I felt so strange. On the one hand, my body felt better than it had in years but at the same time, I had the continual feeling of gut-wrenching loneliness and depression. It was horrendous. After a couple of weeks or so my mum took control (AGAIN!) and said if it carries on too much longer we would go to the GP. I had an appointment booked but before I could get there my mood lifted. I stopped crying and my feelings levelled out.


What next
Had things really changed in the long term? Was this going to be a case of one step forward and then one hundred steps backwards? It is safe to say the first six months of my FMT were intense and interesting. If you would like to find out if these small improvements stayed in the longer term and if I felt any further benefits I will be posting Part Three soon and I promise it is a less bumpy ride.

Please feel free to privately contact me on my blog or message me on social media accounts, which I will link at the bottom, and I will endeavour to answer any questions.
 Also, as mentioned in Part One please look at the clinic's website for their more detailed information on the clinic and FMT procedure.

Other Posts in FMT and ME Series:
FMT and ME: A Bit on the Side
FMT and M.E. Part One: Why
FMT and M.E. Part Three: Did It Work
FMT and M.E. Part Three: Where Do I Go From Here
***
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.

https://www.instagram.com/creating_rebeccah/






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