Much Ado About Loneliness (ME Awareness Day post 3)

This is my third and final post for M.E Awareness Day 2017. This post also links into mental health and it happens to be mental health awareness week too!

Here are links to my other two:

- The Tale Of Two Relapses
- Sense and Sensitivity

Chronic illnesses are extremely complex and with all the physical symptoms mental symptoms can also occur. These, for me, tend to fluctuate a lot. Some people can develop depression alongside M.E. I personally have not but do hugely suffer from anxiety, and low mood. In this post I am going to focus on loneliness which can both cause low mood and be caused by low mood. I have been feeling incredibly lonely recently and I think lots of chronic illness sufferers will feel this at some point.

Why is it so hard to admit to others that I’m lonely?
There is a lot of stigma, no matter what your situation in life, to admitting to any sort of mentality that isn't considered the norm. I’ve never had a problem talking about my feelings, emotions, physical or mental well being to friends, family or quite frankly to complete strangers, but recently this has shifted slightly.

I’ve been ill and disabled for over a decade and with that feelings of frustration about all the different parts of my illness, my life and my future heighten at different times. They ebb and flow, and I’ve usually been quite open about them. The last few months have been a little different and although I have manage to tell some of my friends and closest of family about these lingering feelings I’m absolutely petrified of telling anyone else. Telling my loved ones was hard enough. Those words 'I AM LONELY' are hard to admit

Taking the plunge and telling the world (or the people that read this blog...)
For a while I couldn't work out why recently I was feeling so lonely and isolated from the world and there is only so much social media that can help with that. Sometimes social media often it makes the feelings worse. 

The problem is I can’t cope with constant company, or much talking on the phone, but only being able to go out once a week, and often just for an appointment, wasn't cutting it for me mentally recently. There has to be some sort of balance.

The first thing for me, I always find is to try identify why my feelings have shifted. There usually isn't a definite answer but pin pointing something makes me feel less useless. This also relates to trying to work out why I haven't been able to admit it more openly as well. Establishing why I haven't been able to speak about it has ironically helped me write this honest blog post. The reason is because I am scared.


Scared

I am not scared of being judged, or scared of my own feelings about having some deep down gut wrenching moments of loneliness because I’ve accepted those feelings. I’m frightened that reaching out to people won’t change anything. Asking for help is all well and good but I'm not actually physically well enough to accept more visits or phone calls. I was scared of feeling useless and pointless as I'm not in a position to increase my social life to help with my feeling. I thought I would feel even more alone as my physical capabilities limit my mental wellbeing. It turns out I was wrong! Just the pure act of opening up like I usually do has helped me understand what I am going through and eased the pressure I put on myself over it all.

Over the years I have spent a lot of time with my parents friends, they have been amazing and supportive and would do a lot for me, it’s not quite the same as spending time with people my age. I do sometimes feel isolated from my contemporaries, so more feelings of loneliness than usual are making me feel like I'm missing out even more. I miss feeling like a young woman, I don’t ‘fit’ with the lifestyle of a twenty-something year old, but I don’t always feel like I fit anywhere else either. I've never followed the crowd (and yes this caused me many problems at school) but I do need a sense of belonging. I do want to hear personally about peoples jobs, lives, experiences. It does make me sad but if I'm not too low in mood it actually makes me feel more alive.

I want to make it clear that my handful of close friends are so supportive and do make an effort to see me when they can, but most people don’t live round and the corner. Trying to organising a time to see people is hard enough let alone spontaneously co-ordinating with a low mood but slightly more energy type of day! What gets me through the tough times is knowing that the friends that still make an effort after all these years won't dessert me now, even in the hardest of times.

A helping hand
Writing the blog post has actually helped. It hasn't actually made me feel alone at all. It has helped me process my thoughts and give some context. Reading through this post it hasn't gone exactly how I wanted and I hope it makes sense but I do not have the energy to refocus it. You may be asking did I identify why I have been struggling with awful low moods? Yes I have and it is to do with new treatment I started in December but thats a blog post for another day.

I hope anyone reading this who also feels alone, knows that there are other people out their feeling the same and to know that those feelings will come and go and over time will get better- especially if you let yourself have a good cry.

Sense and Sensitivity (ME Awareness Day post 2)

This is my second post for M.E. Awareness Day 2017.

See here for the other posts:
- The Tale of Two Relapses
- Much Ado About Loneliness

Light, Sound and Touch Sensitivity : What is that when it’s at home?
Essentially my is body unable to cope properly with external sensations. I have such small, precious amount of energy to try and run basic processes in my body, anything extra can often cause my symptoms to get worse. It took me quite a few years to fully understand just how much light, sound and touch affected how ill I feel and how much they impact on my quality of life.

Light
Light sensitive affects me in two different ways. The first is, perhaps the most obvious, that it hurts my eyes most of of the time. Everything becomes a bit fuzzy and I cannot always open my eyes fully because I do not have the energy for my eyes to process the light properly. It is difficult to process information and situations. This often leads to bad headaches behind my eyes, verging on migraines. I suffer from headaches anyway so the light just makes them worse making it very difficult to function or focus constantly. This is why you often see me sporting sunglasses, inside or outside, in a dark room or a bright room, day or night- not because I think I am a celebrity about to be 'papped'!

The second issue, which I find incredible difficult to cope with, is that light causes a kind of physical pain and fatigue. It sounds odd, I know. It is undefinable, underlying pain and exhaustion from any kind of light source, adding to my high levels of fatigue, often making it difficult to do anything.

After several years it dawned on me that the reason I often felt extra awful, even when 'resting', for no apparent reason was because of light sensitivity. When I was feeling particularly bad I would close the world out with the curtains and after thinking about why I had to do this to rest, not sleep I hasten to add, I understood that minutes after I was plunged into darkness I would often start to feel a small amount of relief and release from my pain and fatigue. My body feels better without light because all it is hyper alert and treats light like its attacking me. I just don't always have enough energy for my skin and my muscles to cope with that on top of everything else.

Most of the time I lie with my blind closed, with a tiny crack of light appearing over the top. Sometimes this is too much and I pull across my curtains. Sometimes lights from phones and screens are unbearable, sometimes I sit in a dark room with my sunglasses on to watch a TV show. But there are times for portions of the day I can have my blind up a little to see into the outside world, I never venture out of the house or indeed my bedroom without my sunglasses to hand to at least stop my eyes and head hurting.

Touch
This is a symptom which I with suffer with at a much lower levels than some people. Sadly some patients cannot even tolerate human contact, as even a gentle touch can set off unimaginable pain. I have never not been able to hugged or touched completely. I am hugely thankful for this. I suppose I have a difficulty more with pressure and extra weight on my body, than just the pure sensation of touch.

Clothing makes my skin go on edge, I feel okay in a loose cotton nightdress and very soft dressing gown which I wear everyday, but anything else immediately increases my symptoms. The elastic in underwear or pyjamas and the all over sensation of clothing makes me feel more tired and very aware of my skin and any other pain I'm feeling. Apart from the fact that I would need help to get dressed everyday, I am not well enough to tolerate the clothes at the moment! I have a thin silk duvet as my previous duvet was too heavy for me and along with not being able to move properly underneath it the weight would eventually cause my skin to feel sore. Perhaps the oddest thing my body cannot cope with touch/pressure wise is nail polish! Sometimes I spend a few days painting my nails and often I have to take it straight off as the extra weight hurts my nails, fingers and toes. I don't think I would understand how it can cause pain if I didn't struggle with it.

When it comes to physical touch from other people, the majority of the time I am okay but a few years ago even gentle pressure from a massage would heighten my awareness of the sensitivity of my skin with a painful tingling. This was just one of the hurdles I had train my body to overcome when using massage as a positive therapy on my health. Now gentle, precise massage that is okay and generally beneficial. I have weekly specialised massage therapy but even now sometimes I cannot cope with my legs being even lightly touched with a gentle hand and massage oil. It makes my muscles and skin painful. It can be excruciating and makes me immediately exhausted.

As you can imagine this inability to wear clothes because of sensivity to touch is a huge problem as no amount of rest after getting ready to go out takes away the underlying pain, soreness and fatigue from the extra pressure on my body. As I am only well enough I go out once a week, it doesn't impact on my quality of life all the the time, but it can be highly probablemtic. On the the bright side I do not know what I would do if I couldn't have hugs from my mum!

Sound
Something that I probabably complain about the most- sorry family!!! There are periods of some days where even the creak of a cupboard in otherwise quiet house can make me agitated. In my opinion it feels similar to my reaction to light. My body simply doesnt have the spare energy to always process all the sounds around me. At its worse listening to audiobook can leave me absolutely beside myself. The feeling is hard to describe but essentially it stops my body resting, it puts into what feels like 'fight or flight' but without the adrenaline or the resources to deal with it.

The majority of the time sound sensitivity affects me when I am listening or watching something and I can hear another constant sound at the same time. It could be a tv/radio/music from another room, it can just be a central heating system coming on the radiators making that rushing water noise. It doesn't so much cause my pain like light and touch but it makes me on edge, confused and very, very drained on a bad day.

Some people wear ear defenders, luckily I have not had to go that extreme, but I do have some special ear plugs I wear a lot. They are designed to filter away some background sound. I find they dim excess sound, whether that be traffic noise, people chatting or music but still allow me to hear conversation etc. When I have been able to go to the cinema or theatre they have been an absolute lifesaver.

It is really not the worst of my symptoms but on all days there is an underlying tiredness caused by clashes of different noises and if there are no points through out the day when its completely quiet and my body can rest it can ruin the next few days.

All Together Now
As you can imagine the sensitivity to these normal sensory experiences never really go away and in conjunction just adds to the high level of exhaustion and pain M.E. patients feel. It makes most social situations very difficult and really does impact on our quality of life. As I mentioned in my explanation of light sensitivity, it was quiet a few years into my illness I realised that my senses were causing me problems and extra symptoms. In identifying these I have been able to find ways to deal with with them better and put coping strategies in place. They are just part of my normal life now but I felt it was a topic that might not be fully understood from a non-sufferer and hope this blog post is informative for those who read it.

The Tale of Two Relapses (ME Awareness Day post 1)

This is my first post for M.E. Awareness Day 2017. I have spent the past few weeks trying to write a few posts about the sides of M.E. that people might not know too much about.

Here are my other posts:
- Sense and Sensitivity 
- Much Ado About Loneliness

This post focuses on my recent (thankfully near miss) of a larger, detrimental relapse, that came on unexpectedly couple of months ago.

I never really thought of relapsing as a symptom of my illness, more of umbrella term for when my health declines and it takes months or years to recover from that downturn. Over three years ago I suffered a relapse, making me really worse than I had ever been, partially due to developing a dysfunctional bladder, also known as, Fowlers Syndrome, and partially to thinking I was better than I was and over doing it. Unfortunately, the combination of the two along with  the years since full of tests, procedures, medications and two operations means I have not yet recovered from that relapse. It has been a hard three years, I lost even more of my independence both outside and inside the house and have not gained it back. I hope that gives a bit of context for my thoughts on what I've written below for the last few months.

What happened recently?

In December 2016 I started treatment to alter my gut bacteria, called FMT (Fecal Microbiota Transplantation). I began with an intensive nine days of treatment at a clinic, and now I am carrying on at home biweekly for the foreseeable future, however my body has been all over the place with it and the end of January and beginning of February were really difficult.

I forced myself out the house to see my friends during the period one day in February, even though I felt shocking and physically I knew I shouldn't, but mentally I needed a bit of colour in my life. When I got home I realised if I didn’t stop, if I didn’t take a breath, I would suffer another big relapse. I was absolutely terrified and devastated that my body was punishing me further. It hit me then that 'relapsing' should be treated like a symptom because it needs to try to be controlled, prevented and eased.  I should look at it, for example, like my headaches. I try to stop them worsening or halt them before they get too bad and that is just what I should do if I am feeling like a relapse is going to come, rather than ignoring it and heading into a downward spiral.

Ten years into this illness I have had to, through trial and error, learn a lot about what my body can cope with. It took me years to learn the signs of when I was about to have a short or long term relapse, but had never really managed to see the signs in time. But this time I recognised it and was determined to do something about it.

What did I do?

I postponed all appointments, all outings. I usually am able to go out the house once a week but I cancelled that for several weeks. I crossed a whole load of things of my to do list and focused in on re-adjusting my pacing and planned my activities at home around anything I could do positively to keep my body from breaking. I have a pretty strong morning ‘routine’ that sets me up for the day. As I hadn't actually hit the relapse yet I was trying to still able to keep my morning routine but I quickly I omitted anything that wouldn't be restful. I'm glad I took this because my glands were definitely up, which is another huge warning sign. I just needed rest, heated blanket, a gentle audiobook every morning and all afternoons, for a few weeks. I got to do alot of thinking in this time and one of things that occurred to me was that my afternoon and early evening  routine and had gone a bit haywire in January. I wasn't pacing myself correctly. I was attempting ‘activities’ for too long, for example, sitting on the sofa for more than I could realistically cope with.  I think this was because after my initial gut bacteria treatment I suffered with one of the reported side effects; low and disrupted mood. The winters are always difficult but in January and February I was really struggling and crying all the time with low mood, loneliness and agitation! These desperate feelings were making me use energy I didn’t have to do things to distract myself. No wonder I felt like a relapse was due. My use of energy ‘spoons’ had gone completely wrong. 

Reading this you might think it seems like an easy thing to fix, but it is hard to get the pacing right and it is quite lonely task to re-plan my days for when I felt I was out of the danger zone, as only I can know what is suitable and what is not. 

During my self-allocated step back I slowly thought about my new afternoon pattern. I'm happy to say a couple months on, I think I've just about found a good balance for my afternoon, like my mornings. Now down the line I have created some pacing charts again, which have very helpful and have multiple alarms on my phone to remind how to space things out. I'm still trying to work out my evening routine, where frustration can set in but it is getting there! 

The other thing that was a huge influence was that in sheer desperation we re-started my previously mentioned treatment at home, sooner than I had planned. After the first treatment I felt like my symptoms had steadied but not improved. I was still pre-relapse. Slowly but surely with weekly treatments have helped me re-gain my energy levels pre-treatment (thankfully)*.

Learning

I have learnt that is it is important not to see relapsing as this huge thing that is looming and could strike at any time but treat it like any other symptom that comes with M.E. It is just a bit bigger, mainly because it makes every other symptom worse, and takes more precaution, a bit longer to get over and can’t be eased by one individual thing. If I keep an eye on the warning sigs it probably won’t creep up on me over night and I can deal with it much better in the long run. I was highly distressed to find myself in a pre-relapse state but having avoided it this time I now have the knowledge and the tools to try to not let it progress to a point where I can't fix it. M.E. will always be one step forwards, and two step backwards but this time I am working towards making those steps much smaller by seeing them coming.

But why?

Essentially the intensity of the initial treatment and pushing my health in order to receive treatment but put my body in a poor state for a while. Perhaps I shouldn't have tried to go back to my normality so soon causing me to head down the dark tunnel for while. I don't think I can say one hundred percent this is why I relapsed, it may have happened even if i hadn't of gone out the house for a month after treatment, or even had treatment at all. I try to use my experiences and events to inform my handling of my condition, but once I've used that experience I don't dwell on the ins, outs, ups and downs because that, in terms of my mental health, is a recipe for disaster.

*Update 2018: Information on my FMT treatment in the the following blog post FMT and ME: Part One Why?

Funny Girl

Funny Girl was lovely, charming, brilliant and of course funny.

The Show
I really love going to theatre but I usually only manage it once a year as it is very difficult for me. I therefore really try to choose something I think I will enjoy so as to not to waste my energy. The last few years have been shows I've enjoyed but not lived up to my expectations. This year I chose to see the Funny Girl tour at Woking Theatre. I was happy with my choice as I wasn't overly familiar with the film so I would not be constantly comparing the story, and although it is a musical and would be loud, the music would be beautiful rather than lots of drum and base. Another plus is that it would not be full of bright flashing lights. Natasha J Barnes led the cast. She was rarely off stage and her voice was the centre piece for the majority of the songs. The songs are not easy, and not once did she falter or tire. Every spoken or sung word and every movement was 'on point', fresh and energised. I was enjoying the performance but was not really wowed until her rendition of 'People'. Up to this point she had been funny and charming but when she sang 'People' she sent shivers down my spine. Her voice was strong and full of emotion. I felt the whole audience captivated around me. I am always very aware I am at the theatre because of high pain and fatigue but her portrayal of Fanny Price in this song briefly took me out of my body, out of the theatre and into the character, into the story. After this there were of course lots of similarly brilliant songs, especially 'Don't Rain on My Parade'. In fact she was so good I was worried when she did a powerful duet with her leading man, Darius Campbell, he would be drowned out but their voices blended beautifully. Campbell, you may remember his popular single Colourblind, made the role of Nick Arnstein his own. I recall from the film Omar Sherif portraying him with a harder, scarier side when he flipped. In the film he was a much more of a jackal and hide character, which probably fits better with the real life crook that was Nick Arnstein. However, I enjoyed a more complex characterisation. Even when Campbell's character was angry and behaving badly, he had an element of emotional angst about him. He was a smoothie, a manipulator, a man with a massive chip on his shoulder but amongst all of this was softer caring side towards Fanny. Campbell's portrayal of Arnstein did seem to feel ashamed of the pain he caused Barnes' Fanny Brice. It made for an interesting dynamic and I don't think there is anything wrong with changing the characterisation a little, even if the real life person was probably not as caring, because in essence the story was unchanged.

I have focused on the protagonists in this review, purely because they were on stage such a lot but the rest of cast were also fantastic. They created a slick and enjoyable show that I highly recommend!

A note on the accessibility
I still get frustrated that most theatres and venues do not have the availability to book online for disabled seats. I appreciate that each disability is different but once your needs have been established for most people it would be pretty easy to pick the disabled seats online. The problem with booking over the phone is that I really struggle with phone calls so someone else always has to do that for me and of course you cannot see where the seats are over the phone. The most frustrating thing is having to use a premium rate line, which can quickly cost the caller a lot of money. Woking Theatre's website directs you to a premium line, but after a bit of internet detective work I found the local box office number: 01483 545 900. My mum booked our tickets via this and it was not a problem.

I believe they offer quite a good discount for disabled patrons and their carers but I am not sure what this deal is because they gave us the disabled rate to start with and we didn't catch what the operator said the original price was. but we got a great price and paid £37.50 for two good seats in the Royal Circle (I checked online and the row in front of us was listed at just under £100 for two seats). So although I can't help you work out the price of future productions you will get good seats at a fantastic price.

The New Victoria Theatre in Woking is one of the easier theatres to navigate when in a wheelchair. You can use the normal entrances like everybody else, no back entrances with rickety ledges and ramps or doors that that have to be opened especially for you here! The disabled loo is a little more tricky as you have go through heavy doors into the cinema area to access them. The usher on the door into the Royal Circle was helpful and friendly and talked to me rather than my mum (carer) which is usually the case. We had seats in a specific wheelchair row where seats could be taken out for those staying their wheelchair. As I was transferring out we had two seats at the end of the row and my wheelchair was stored nearby (yes, health and safety of everyone else) during the production but bought back to me in the interval and just before the show finished.

There are still tickets available for the tour at various venues staring either Natasha J Barnes or Sheridan Smith into August 2017.

All in all it was a lovely birthday treat and the great disabled access made it all very easy and an enjoyable evening. It was a fantastic show and even my mum, who is not the biggest musical theatre fan, said she would definitely see it again in the future.