Sunday, 29 November 2015

The Good, the Bad, and the Payback

Hello my lovely people,

Firstly, thank you so much for the lovely feedback we've had about mum's post. Despite her worries, it's gone down a treat, and everyone seemed to enjoy it (even if it made them cry!). She truly is a wonder.

As you most likely remember, I wrote a post going through how the average good day looks for me in A Day in the Life.
At the time I wasn't ready to talk about how a bad day looks, and how the Payback that surrounds those bad days feels.
This post is about that.
As such I should probably warn you that it's not the happiest of posts, because the bad days can be pretty horrific, and there's not really a way to sugarcoat something like this. But I think it's good to talk about it. It's quite cathartic for me, and also gives you an idea of why I'm so very strict with myself all the time. 

Payback is actually quite a hard thing to talk/write about. This is partially because when you're during a good period the last thing you want to do is hash through the bad times, but also because it's genuinely quite hard to remember the details.
Because of the worsening cognitive symptoms of CFS/ME during these dips, your memory gets considerably worse, so after you start to come out of a dip you are mostly left with a general feeling of "oh dear god I hope that never happens again".
I can't actually remember that much about when I first got ill for the same reason. I know that it's the worst I've ever felt, but the details are all rather fuzzy, much like when you're delirious with a fever.
(There is part of me that wonders if it's also the brain and body trying to protect itself, like the way the body releases chemicals when women give birth so they can't remember just how bad it was. They know it was bad, and have no qualms in telling people that it's the most painful experience of their life, but they'll still do it again because their bodies protect them from it, thus ensuring the continuation of the species. Yay science!)

The only way I've managed to write this is by, a. writing it when I'm just over the worst (fingers crossed!) of the Payback from my last drop having donated blood to a ME/CFS study (won’t be doing THAT again!), and b. by trying to think about how it felt when it was happening and then trying to haltingly verbalise it to my mum at the time.

Payback is generally just rather dryly described as "a worsening of symptoms", and yes, it is that, but it's also a lot more.
It's different for every sufferer depends on their weaknesses, different things will trigger it, and depending on their usual level and exactly how far they've gone overboard it'll cause a different level of energy drop.
If Payback causes sufferers to drop between ten and twenty percent for example, then those who are already lower down that scale are at greater risk of the consequences. 
(That doesn't, however, mean that those further up the scale aren't suffering and can't put themselves further down the scale of they're not careful. Sometimes sufferers at the higher functioning levels suffer more from it because they're more likely (and more able) to push the boundaries further.)

Payback has its own levels. My bad days can be needing to stay in bed more, or needing to do less, or it can be a full blown Payback Period. (It's basically anything from the worst case scenario upwards.)
A full case of Payback for me goes in stages. It rarely hits straight away, so there's a very odd moment when I can feel it's coming.
My energy levels start to drop, my limbs start to ache like I've got flu, and I start to feel really restless and uncomfortable in my skin. (I get this when I have flu as well, the best I've managed to describe it is "my skin feels weird". The bard I am not.)
It's not unlike the moment you move and you realise your leg is numb and you've got a short amount of time before you get pins and needles but there's nothing you can do about it.
This stage is like the herald announcing things are about to get serious, so I try and warn my parents, get to bed, and say anything that needs saying before I reach the next stage.

At this point the energy drop starts to gain momentum, the muscle aches get worse and I start to have difficulty thinking, moving and speaking. 
This is very frightening because you're just aware enough to know that you're not fully functioning. 
In my mind it's like the part of your brain you have no control over shuts everything down apart from your most basic functions (breathing, organ function), so you can't really do anything that's not completely necessary to your immediate survival.  
(To my fellow geeks, think rerouting all remaining power to basic life support systems. Fine on a spaceship, terrifying in a human.)
I call this stage "Emergency Shutdown."

Pretty much literally, the only thing you can do at this point is rest and wait for your body to gain enough energy to come out of the danger zone.
It's worth reminding you guys that I'm not actually in danger unless I keep trying to push it at this point (although frankly I'm not sure how I could). I'd pass out first, and that'd give me time to get energy back. And I've never let it get to that point.
(Note: some sufferers symptoms include passing out on a fairly regular basis, it doesn't mean they're at the same stage I would have to be to do so, but obviously they should rest to avoid this.)
Payback, as a general rule, is a horrible, harrowing experience, but it's not dangerous if handled correctly.

The next few days is pretty much guaranteed to be spent in bed. During this time I'll be extra tired, have achy limbs and joints, have bad headaches, and be less able to move and speak. I'll tire much quicker and do much less.
Despite the extra tiredness I can often have sleep disturbances at this time as well.
This is the bit that I'm least able to remember with any clarity. Even now it's hard for me to remember what happened last time and that was two weeks ago.
The most I'm able to do during these times is read on my phone or go on social media (I've said before that those are my least tiring activities).
Washing becomes difficult. I'll normally try to wash in the sink everyday and get my hair washed every other because I hate feeling dirty and it helps relax me and keep me sleeping well. Showers and baths are a complete no-no.
In the evening mum will wash my face and hands for me and bring my electric toothbrush through so I don't have to get out of bed unnecessarily.
There's not really a set schedule on bad days because there's no way of knowing what level I'll be at. 
We keep food times the same, sometimes with more snack in between, to keep my blood sugar levels as stable as possible. Any blood sugar drops affect me much more on bad days so we have to be extra careful.
Bedtimes are extra early, and despite my usual assertion that it's bad to mess with your circadian rhythms by sleeping in the day, I'll normally nap in the afternoon and pass most of the day in a haze of rests and relaxation tracks.

As the days pass and I build energy, the worsened symptoms slowly go. The movement and speech tends to come back first, although I'm fuzzy headed for a while after, then the aches recede until it's back to the normal symptom level (these things never go away completely).
I'll slowly start spending some time downstairs, building up as I get stronger.

The tiredness stays the longest, and after the official Payback period is over, I'll find myself at a much lower ability and energy level than I was before. Depending on the Payback severity this can take a week, a month, or several to get back to how I was. 
Emotionally this is the hardest part. When I'm in the depths of the Payback period, I'm too sick and exhausted to feel upset or angry or frustrated. The return of these feelings is actually a sign of improvement, but that doesn't really make it easier.
Even though I always fear it won't, I know on some level that the worst of the Payback will pass, but the effort it takes to build myself up afterwards is massive, and another round of payback can happen at any time and scupper my improvements.
I get so frustrated and it makes me feel a bit like Sisyphus, pushing the same boulder up a hill only to watch it roll down again, but it's only by making these mistakes (be they emotional or physical) that I've learned what my triggers are and how to avoid them.

As I said, Payback is always on a sliding scale, but I'm slowly suffering from these massive Payback period less and less (touch wood!). 
I'll often have worse headaches or join pain and tiredness, but not to the same extent I used to.
Hopefully over time I'll experience it less and less and as I improve it'll become even more difficult to remember how it felt.
Eventually, this whole experience will be nothing but a distant memory.

Tuesday, 3 November 2015

Guest Post: Mum speaks out!

Hi, I'm  Karen, Hannah's Mum and full time carer along with my partner David. Hannah asked me to write a blog page from our perspective on this journey with M.E. 

I'll try not to embarrass you Hannah, because I know you get to choose my retirement home so Im going to bare that in mind!  But I'm going to be telling this as it is.

I also hope to give some useful tips to others who find themselves in our position.

Hannah was a very lively, active and loving child; I have vivid memories of a cheeky, charismatic smile through cot bars, wanting to play at 2am when I had to be up for work at six. I couldn't help but smile back.  

And at three standing on a stool and giving us a rendition of South Pacific's, " I'm going to wash that man right out of my hair" (complete with all the actions)!

" Tigger" comes to mind; although a whole lot more academic!

All you really want for your child (however old they are) is to be happy and healthy. You nurse them through all the "usual" childhood illnesses and, if you are lucky, nothing too serious. You can usually make them better, but if you can't, the doctor usually can. The hardest lesson to learn as a parent of someone with M.E., is that you can't make them better and the doctor doesn't know how to either. So there you are as a family in "limbo land".

I think the abbreviation fits the illness very well. M.E. (ME). "ME" is a selfish, all consuming and cruel illness: it doesn't even allow its more severe sufferers any form of social contact, music, books, film, television or even the chance to get out of the four walls. "No, you must all think of ME", it says and it tries to take over the whole household.

You have to forget the " normal" progression of an illness - with M.E. these rules do not apply. 

From the outset "trust your parental instincts". You know,that wee, small voice in your head that says, " Something is very wrong here". You know your child and know when something is different to the norm.
Make sure the doctor refers them to the local M.E. specialist if all the blood tests (don't panic when leukaemia is among those tested) come up a blank and the list of symptoms fit the bill. In her case it took seven months, and that’s because she had a good doctor. 

During this you mustn't let them feel under pressure from others to race toward recovery; to feel the demand from other people to be the healthy and lively person they know again, as this is the surest way for them to have a crash. Pushing someone too hard with M.E. can cause a relapse in symptoms which can set the sufferer right back to the beginning again, feeling very frightened not knowing if they will spiral down even further. 

A good analogy of M.E. is a game of "Snakes and Ladders". The sufferer feels as if they are improving, so they do a bit more and a bit more but don't leave themselves a reserve of energy which then causes a "crash" and off they go spiralling down the snake again.

We have learned over the last three years that you must tailor the care of the sufferer around them.  We have learned that there are varying degrees of M.E.and improvement is painfully slow. Not all people suffer to the same degree or with all the same symptoms, a concept the public struggle with,  equating your state and capabilities with other sufferers know to them.

After a while and because of this lack of understanding, we decided that we were pretty much on our own and we would fight this thing as a team. Ignore the silly comments and misconceptions and just plough steadily on. Some suggesting that she had it cushy here and wasn't trying. I ask you, What 26 year old wants to be stuck in a house with two oldies, in a cul de sac in rural Norfolk for three years when they had established an active work and social life in London?

As a couple we knew there were going to be sacrifices on our part but what other options did she have? She was too unwell initially to move out of bed or decide between tea or coffee. She couldn't work, pay her London rent and would have been alone in a house all day unable to get her own food, shopping etc. we have often questioned how a person on their own copes with this?

After diagnosis we were allocated an M.E. Service physiotherapist/ Nurse. She has been a godsend and continues to be very helpful and supportive and with a true understanding of the illness. If we have any questions she gets back to us with advice and visits every quarter. This is not just supportive to Hannah but also to us; to actually have a medical professional visit, you don't feel so forgotten and isolated.

Social and Household Adaptations
Hannah is sociable by nature, and thinks of others comfort first, but as you know to maintain her level of capability she has to limit any visits to a maximum of half an hour; when she is able to see anyone at all. If she does, it can only be one person, once a week. 
This means that we don't have visitors unless they are pre-arranged (our house is very small and noise carries). 
Its hard at first, but you have to be adamant about this, even though some people don't " get it" initially. 
Normally popping in to see a sick person unannounced is fine but every minute of effort talking to a visitor exhausts the sufferer further. 
Our calendar has never been so strictly organised. Every visitor is carefully planned and worked around to make sure that there is enough of a rest break before, between and after. So even a handyman's visit needs to be planned carefully. Extreme, I hear you say, but it works.

A resting regime is the key to stabilising and improving. Initially diagnosed as mild to moderate, the first two years Hannah fought with the need for complete rest which saw her relapse to the point of becoming housebound and being re diagnosed as moderate to severe. But in the last year she has made the decision to accept her limitations and follow her strict resting regime which is beginning to work for her, albeit tediously slowly.

With her hearing becoming extremely acute even the sound of the kettle boiling causes her discomfort. We are constantly having to think to shut doors which would otherwise have been left open. We have had to learn to talk more quietly. 
In the evening David and I watch TV with subtitles on because Hannah is generally in bed by six thirty/seven o'clock and her room is above the lounge. We can't have the TV or radio on whilst she is on the sofa in the lounge - so, no more daytime sport for David unless it's on his iPad in the kitchen or Hannah's in her room. 
If a friend calls to see us, which we have planned, we will normally sit in another room. We keep our own visitors to a minimum. No noisy dinner parties...we would be constantly concerned about disturbing her in her room, and so, affecting her recovery. This is not a complaint, this is how it is and we accept it, because if that's what it takes, we will do it. 
Now when we go out in public we notice the continual noise in the environment, loud music and loud voices jar. We have told her she would be an asset to a super hero group with her super hearing....if only she could physically get out.

 Against their life training and personality, and in order for the  sufferer to cope, they must learn to be more selfish. To say, "Sorry, but I'm tired now" and bring a visit to an end. Although their dearest wish would be for that friend to stay longer. Often crying after they've left because they miss them so much and are worried that they feel pushed out after making the effort to visit. This is hard to see and even harder for her to do. She loves people and as an only child its heartbreaking to see her cut off from her large group of friends.

Talking of her friends I would just like to say that, in a world that I often despair of, I have been stunned by the thoughtfulness and kindness of these wonderful people. I have frequently been moved to tears by their actions over the past three years. We were so afraid that time would go by and that people would get on with their lives and gradually fall away leaving her more and more alone. This has happened to so many with this illness compounding the effect on their lives. But I'm so happy to say that I don't fear for the future of this world with these amazingly caring people in it. Thank you! Take a bow! Without you I know she would find it impossible to cope.

Hannah struggles with the more physical help we provide. Having to assist with bathing or showering when your child is an adult is awkward for them, but it’s got better since the Occupational Therapist recommended using a towelling robe for her.
Skinny jeans are tough to remove when the wearer has run out of steam at night - I just pull from the top and dart in the other direction!
If the person you care for gets painful spasms, Hannah's are in her chest, rather than medication we have found that the quinine in tonic water helps. She hates it and the faces are "extremely interesting", (almost a Jekyll and Hyde transition going on), but  it works.  On a couple of occasions I've had to physically roll her onto her stomach to place hot water bottles on her back because she couldn't move for the pain.

Hannah’s strict resting regime can be a challenge too. 
I'm naturally chatty,  but I can't just "pop in" to ask about something because "resting" means just lying there, no conversation and no stimulation of any kind, broken down into regular rests throughout the day. This is a tricky one for me because, being of a certain age, things pop into my head and if I don't tell someone pretty rapidly I feel I'll forget. I have always sung, danced about, held conversations with the cat about what's, " going down in the 'hood" and can basically be a bit weird...this I have had to rope in and subdue because it's not conducive with Hannah's recovery. At first I kept forgetting when the rests were and would get very upset with myself for getting it wrong but its easier now.

Depending on how she is, most nights I will go up and lie on her bed for a few minutes to give her a hug and have a quiet chat. Sometimes that's when there are tears as she sees another day pass but I can normally get her to giggle ( not very restful but it's as healing as any medication).

David has had to improvise too. He's invested in a pair of headphone for his iPod so that he doesn't miss his favourite radio programmes.
Sadly he's adopted a kind of eerie ghostly whisper to music tracks which we find very disconcerting! 

I miss the radio plays and quizzes David and I used to listen to over lunch together especially Bill Nighy as Charles Paris and Clare in the Community and the Round Britain Quiz. We have started talking to each other a bit like the Les Dawson sketch ( the one where he is dressed as an old woman in rollers mouthing words over the fence to his neighbour). We also use hand signals...but we won't go into that!

The most difficult aspect is trying to keep the person you are caring for positive. There are frequently tears of despair because three years of her young life have already slipped away. So we try and focus on the achievements, the positives, but sometimes this just doesn't "crack it" and all you can do is just be there to hold them because nothing you can say or do is going to change the situation.  Because there is no time span for recovery there is obviously a great deal of fear that things won't improve. But we do know several others who have and we keep them as our focus.

For the last year she has been unable to go out, I try and bring back obscure things from my shopping trips or walks. Sometimes it's just a leaf, a conker or a flower so that she can enjoy the changing seasons by having it come to her or I take a photo of something I know she'll like. Sometimes it's just a funny card or a video of the sea. 

Because Hannah had watched, "Murder she wrote" with my mother when she was little, she became hooked on murder mysteries, from Agatha Christie to Wire in the Blood ( braver than her mother!) She misses being able to read or watch these so I wrote and asked if Ms Lansbury would write in a card. The day it arrived Hannah was particularly down but within seconds of opening the card she had a beautiful smile from ear to ear and she was lifted. When life is so restricted you have to pare down to little pleasures and there are little pleasures to be found, if you look for them on their behalf. 

The Big G
Getting away from home is important for the carer's morale, even if it's just to the supermarket or for coffee with a friend. However, trust me, every time you step out of the door you will feel a great sense of guilt because your child can't "just" go for a coffee. 
In the last year I have experienced the seasons change, attended birthday celebrations, had the odd day out with friends, seen a niece perform at the Albert Hall and taken a couple of two day breaks leaving David at the helm. Something I wish with all my heart she could do instead. 
Even though I feel guilty I do come back refreshed and have more to talk about. 

David has been very understanding about the lack of holidays - something we had planned to do in retirement. But one of us has to stay and we are prepared to do that because we love her and we want her to be able to improve and experience all the things we have been fortunate enough to experience. David has even learnt to cook and does extremely well given the paleo diet restrictions.

Within the last month we've employed a carer for five hours (self funded) so that we can have some time out as a couple. Finding time for yourselves can be a problem. You also you get tired, not just from the caring, but through all the emotional stress. Carers are not cheap, but worth every penny. We went to Crossroads who supply carers for carers and are a nationwide charity and come legally checked and recommended. It's important to find help who take note of the persons specific needs. For example with Hannah -  because of heightened sensory functions she can't cope with perfumes which can give her terrible headaches, her hearing is very acute so a quiet voice is essential, regular meal times, and someone who doesn't demand conversation and is prepared to sit quietly and read whilst Hannah is resting. 

We also had a Careline and a key safe fitted in case of emergencies; if our car should break down or we have an accident then she can ring for help and the services can get to her.
A good friend gave us a "Lions green pot". You put a green sticker on the key safe and the place where you keep the pot (the fridge is normally used). Inside you put all the information needed by a medical team, your doctors number and surgery, her condition, even whether you have a pet in the house that will need to be cared for. Once the ambulance team see a green sticker they know where to look for all they need to know.

Food and Chemicals
Six meals a day sounds a lot but since having M.E. Hannah becomes shaky and faint if she has a drop in fuel/energy. It's as if she doesn't absorb the nutrients for energy even though she eats well.

The paleo diet for Hannah means no dairy, gluten, potatoes, caffeine or sugar. It's actually very healthy and to save cooking different meals we all eat it (except David and I secretly indulge in our dairy and sugars, out of sight). I make all her bread and  breakfast cereals. She eats fresh salads or vegetables with every meal. She has stuck to it with conviction and we have seen an improvement in her. By doing this she suffers far less from the shakes.  The weight loss was quite concerning at first but now she seems to have stabilised. 

Cooking everything is very time consuming. But a lot of normal recipe ingredients can be supplemented.  For example I can't use stock cubes, they have sugar in them ( it's easier to list the things sugar isn't in!)  so I get free beef bones from the butcher ( he has his own local herd) and make my own stock for soups and broths. I have learnt to supplement sugar with coconut sugar, vinegar with lemon juice and other oils with cold pressed oils such as coconut oil. We use cold olive oil, as heating it changes the benefits. This was a whole new learning curve for me, although I trained as a home economist and have always made fresh meals this was a whole new ballgame. But now I bulk cook linseed bread, bake chocolate paleo cookies and freeze them and make large jars of cereals/ granola. 

If she is able, we try to get her out in the sunshine on a bed swing in the garden with duvets and cushions when it's not too hot/cold (it stays static because the motion would make her feel awful).  She enjoys this but has to wear industrial headphones as we are near an RAF airbase and a, seemingly, deaf neighbour with a fondness for rap. 
When she wasn't getting enough sunshine her vitamin D was very low and she was given tablets. I make sure I cook oily fish at least once a week and she eats raw spinach in salads most days. She has a sunshine lamp as well for the winter months. 
This diet was suggested by the Optimum Clinic and I have to say we have seen her improve very gradually now that all the toxic stuff has been removed from her diet. I buy organic where I can and hope to grow my own next year.

We noticed that chemicals seemed to affect her, Aerosol sprays particularly so I now use an Aloe Vera product and it works very well because it's low odour, natural and gentle. I even do the washing with it. My cleaning product bill is much less now I'm using just one product! I don't use any hairspray or perfume, air freshness or diffusers either and offloaded all my other chemical based products to friends.

We also put in a water filter tap to take a lot of chemicals out of the drinking water.

Missing out
I see her watch her friends live their lives, have careers, have families and she is delighted for them.  I'm also delighted for them but, forgive me, I also see her watch something else she is  missing and my heart goes out to her. The loneliness is dreadful. As crazy as David and I can be we cannot replace the vivacity and fun of youth.
I wake sometimes in the morning and try to pretend that this was all a dream and she is still enjoying her life and freedom.

Lack of public understanding however is generally a problem and the press do not help. I took a long time to come to grips with the effect this has on a persons whole life. Perception needs to be corrected. More people need to know about and accept this illness (especially the medical profession). Despite the research, medical proof of differences in the T cells of a sufferer and proof on imaging that a resting M.E. sufferer gets less blood to certain parts of their brain than a  healthy person, plus the sheer volume of patients suffering with various degrees of this, some doctors blatantly refuse to believe it exists.  It has a stigma of being a depressive illness - it isn't; but who wouldn't BECOME depressed living in this seclusion and with these restrictions? 
Viruses are forever evolving, mutating, is it so hard for a doctor trained in science to stretch their imagination and skill to believe there are illnesses out there they do not yet fully understand? It is either arrogance to believe they know everything or short sightedness. Surely their hypocratic oath  should prevent sending patients away feeling they are not believed or supported. It is basically saying," I can do nothing for you. Go away". "You are on your own, mate". Even a supportive phone call every few months would be good. As these people can't get to the doctors, these patients are generally not ones to be constantly appearing for appointments at the surgery, so they become invisible.

It has been very hard to see my once very social and lively daughter of twenty nine having to go to bed at 6.30 whilst a young child next door is playing out in the garden for hours afterward.   However we are also grateful, because many with this illness are lying isolated in darkened rooms somewhere, tube fed or unable to even bear the human contact of a touch because it is too painful, for years.  It is said,those suffering with very severe ME have the same quality of life as those in the last months of a terminal illness. If you are one of those carers out there; not a day goes past without me thinking of you and the struggles you face. Even though it must feel otherwise, believe that you and your patient are not forgotten.

The hardest day for me was sitting on Hannah's  bed whilst she cried and explained that she had to say," Goodbye" to the person she was before, in order to go forward as the person she has now become.
This may sound odd but she explained that, normally when you are trying to get better, you are trying to achieve the level of health you once had. To be the person you were. But to physically try to aim for that level of energy now would be setting the goal far to high and could ultimately be unachievable.
She said it felt like grieving, not for another, but for the "self" she has lost. But in order to go forward she must accept herself as she is now and begin again.

I know Hannah worries about the retirement we are unable to fully enjoy. She apologises but I tell her to turn it around and make it a positive thought; as her Mum, I suddenly get to spend more precious time with my wonderful human being of a daughter. That the world is missing out but, watch out, she'll be back! 

We spend time collecting her favourite Vintage clothes which are "timeless". This may seem strange given she can't go out at the moment,  but when she does emerge, which we believe she will, it will be beautifully dressed!

Tuesday, 20 October 2015

Anniversaries and Inspirations or How I Keep Upbeat

Hello again my lovely people,

I’m sorry it’s been so long, but phew! It’s been busy here. It’s not completely unexpected though, because this period in the year is always a little hectic for various reasons.
One of those reasons is that I've start planning Christmas. I know, I know! It’s ridiculously early, but I have to do things so slowly that I need to start ahead of the game. 
Plus I just genuinely enjoy buying or making people presents, and, as you can imagine, it’s really important to keep upbeat. 

Remaining positive sounds like a ridiculous thing, but if you're in a positive place emotionally it helps keep your system in a calm and relaxed state; which is exactly what your body needs in order to be able to heal more easily. So that's what I'm going to talk a bit about today.
Because things tend to blur into one another a bit I'll put the things I consider as an item on the Grand List of Upbeat in bold so you have an easy reference point to all the separate things I use.

Keeping upbeat can be difficult at any time, but at this time of year it's especially important to keep myself positive because I have a few difficult anniversaries clustered together.
The end of September marked my first full year being housebound. That’s been a tough one to deal with, I’m not going to lie, and I felt that one looming long before it actually happened.
(In case you're wondering, we don’t count the misguided emergency doctor’s appointment as an outing. That would be rather like considering a trip to A&E to be the same as a mini break to the Costa Del Sol.)
My next anniversary is at the beginning of October, when it’s my birthday and finally, the 1st of November marks the anniversary of when I got sick. 
That’s right, since I was what’s known as a Rapid Onset case of ME/CFS (I woke up one morning horribly ill and didn't get better - Slow Onset is gradual downward spiral taking several weeks or months), I actually get a day to mark down.
This year will mark the third. Hoi.

You may be wondering at this point why I consider birthdays such a stressful time that I lump them in the same category as "Happy Haven’t-you-left-the-house-in-a-year-and-are-essentially-a-hermit Day" and "Merry Sickmas", but, I have my reasons.

Before I got sick, birthdays were always something I’d considered as a chance for a fresh start. 
I feel like someone's birthday is a person’s true New Year; a time when they can look back on their achievements and plan goals for the next year. Preferably while eating their own weight in cake.
(This is partially because I consider actual New Year to be a bit rubbish. I’ve never really liked getting super drunk with people I don’t know very well and I’m not a fan of huge party crowds (unless there is fancy dress involved), so aside from the large amount of fireworks, I’d rather hang out with a smaller number of friends.
The best New Year I’ve ever had remains eating chilli with a couple of mates and playing Trivial Pursuit. Rock and roll.)
Unfortunately since becoming ill, birthdays have become less of something to enjoy and more a reminder that I’m still not better yet.

My last birthday I was horrendously ill, and I had just come to the realisation that I was getting worse rather than better and that I desperately needed help.
It was one of my darkest times, and I’m so grateful to my family and friends to helping me to find the strength to fight and find a new way at looking at my illness.

This last year has been so hard, but through all the hard work I’ve put into my resting regime, and diet, and the appointments with my psychologist and hypnotherapist, I really feel like I’m more in control of my ME than I ever have been. Before, I was just being dragged along for the ride, now I’m actually in the saddle.

Perhaps that’s why this year my birthday wasn’t as upsetting as usual. Don’t get me wrong, I still had my “Oh god this is not how I want to be spending my life” moment, but for the most part I was just so glad for the last year to be over.
I also have such lovely friends and that always keeps me feeling bright. This year several of them even created a wonderful Happy Birthday video to send me best wishes and to make me laugh.

My friends play such a big part in keeping me upbeat, and even though I miss seeing them so much, I’m so grateful that they have stuck by me, when so many others would’ve given up on someone who can’t join in anymore.
They send me post, or jokes, or silly cat gifs, and chat online or by text, and they always, always make me feel like I've not been forgotten.
(This relates to another item I've briefly mentioned earlier is that I like to buy/make things for my friends. They're so ace, who wouldn't want to make them feel awesome?)
Having such supportive people in my life makes such a difference to my state of mind (and therefore health) and I truly couldn’t do this without you, my wonderful, wonderful friends, so thank you for always being there for me.

I'll give you a second to recover from that truly soppy moment before moving on to my next way of keeping inspired and upbeat; The Wall of Joy.

Okay? Good.

The Wall of Joy is something I've had ever since I moved away to uni. It changed every time I moved, but usually comprised of a mix of my favourite cards and post from friends, photos of them and my family, and artwork I liked. The longer I spent in one place the bigger and bigger the wall would get.
My current Wall is a lot smaller, and really more of a corner, just because I’m not able to stand that many different things to look at in a relatively small place anymore. But it too has grown over time to include different objects as well as artwork, photos and quotes.
Here it is.

The “IF THAT’S WHAT IT TAKES” paper was the first thing to go up, not long after I started my resting regime. It might seem a little depressing, but the truth is, sometimes you have to do things you don’t really want to in the short term to improve in the long term, and this has always helped to remind me of that, so that I don’t throw away my progress for a short-term victory.
Plus on the inside of the paper it says “You can do it”.
(It actually is a good indicator of my level at the time. I couldn’t manage to look at more than one relatively blank piece of paper without feeling overwhelmed. Kind of horrifying, but other things have slowly joined it and that I’m not at that stage anymore.)

The next thing to go up was, “STOP. TAP. CHOOSE.”
This refers to several of the psychological tools I’ve been taught by the Optimum Health Clinic. 
(I would consider them a separate tool to the Wall of Joy in my never ending quest to keep upbeat, but the Wall is where I'm most reminded of them.)
I’m not sure how far I can go into the exact details of this, but “Stop” refers to their Stop Technique, “Tap” to Tapping or as it’s sometimes called EFT, and “Choose” to the final stage of EFT, where you choose a positive thought.
The idea is to use the Stop Technique to halt negative thought patterns and shift onto something more positive, to use EFT/Tapping to release negative emotions around the subject, and then to choose how you would rather feel at the end of said Tapping.
These are my most used tools and I find them very effective. 
As I’ve said before, Tapping looks and sounds mental, but when you’re doing it it just feels like releasing all your worries whilst still being positive about it.
There is more information on Tapping here
The Stop Technique is the Optimum Health Clinics own invention taking parts of other things like CBT and the Lightning Process.

Next on the Wall there’s my “Certificate of Awesome”, given to me by my mum, and my favourite photos of her and my step-dad, David. This collection of photos, taken at a family friend’s wedding, shows how truly mental they can be. It is one of the reasons we get on so well.
Even more than my friends (sorry guys, they pipped you to the post!), I could not get through this without my amazing parents. They have been so incredibly understanding and supportive and are always looking for ways to make my situation more bearable. 
They’ve even given up going on holidays together to make sure I’m properly looked after.
(Again, my parents are their own category in keeping me positive, but the Wall is there to celebrate those things as much as provide them, so that's where I'll list them.)

Next the objects started to be phased in. My star lamp from my friend Caroline, and my handmade one-of-a-kind felt BMO (the little turquoise dude) from my friend Nick. BMO is my favourite character from the TV show Adventure Time, and one of my prize possessions.
To match BMO I added two more characters from Adventure Time, Fionna (rabbit hat girl) and Cake (big squishy cat). 

The last thing to be added to the Wall is the Phoenix card, sent to me by my friend, and honorary sister, Catie.
This card has, rather unexpectedly, had a massive effect on me. 
As well as being the nickname of my grandfather, I’ve seen phoenixes adopted as symbols of those with chronic illnesses several times, and within the tail feathers of this particular phoenix is a beautiful quote by the poet Rumi. 
It reads: “You have seen my descent. Now watch my rising.”
Those words have become something of a mantra to me, which segues, rather neatly, to my next way of keeping upbeat.

For my birthday I had two silver mantra bracelets made. One I ordered myself, and one was a gift from my mother.

The first is made of old art deco spoon handles (to reference the Spoon Theory) with the engraving “trust” on it. It’s to remind me to trust that things will get better.
(I’m pretty sure my friend Josh will tell me I should have the words “no one” added after “trust”. Unfortunately for Josh, as funny as that would be, I don’t think that would be as uplifting.)

The second is a silver bangle stamped with the Rumi quote I mentioned above. 
It may be trite, but the reminder that life is a cycle and that ups and downs happen is incredibly important to me. I've been through a lot, and having something on my wrist that, despite it’s elegant wording, essentially shouts, "F*** YOU BIG BAD TIRED, I'M TOTALLY GOING TO BEAT YOU!", makes me feel a lot stronger.

Fewer things give me more examples of ups and downs in life, than my next item on the list; my cat, Jessicat Fletcher. She swings between adorable fluffball and evil genius faster than you can say, “it’s only a flesh wound”.
The vet called Jess “a character cat”. I think that’s diplomatic speak for a vicious hellbeast.
She does, however, make me laugh every single day, whether it’s because she's falling off something, having a yowl-talk with my mum, or just generally being a sassy little miss. (Her cuddles are also excellent, when she deigns to give them.)

Also, getting Jess was a big surprise. A massive surprise. Because to say my stepdad is not an animal person is a colossal understatement.
Me and mum had tried for years to convince David that getting a cat was a good idea, to no avail. 
However, after I’d been sick for a while, David took one for the team, and suggested we have one of my cousin’s cat’s kittens to help cheer me up.
Thanks, David. 
Best present ever.

Similar to the Wall of Joy, is the Happy Thought Jar; a jar full of lovely memories written on little bits of paper.
When I feel low, I fish around in the jar and pull out a Happy Thought.

These can be compliments I've received, trips me and my friends have made or memories of the things they've done to make me happy. The birthday video is definitely going in the jar.

The final way I keep upbeat is by focusing on achievements. I like to think of that as a more positive way to count my blessings. 
Counting your blessings usually involves comparing your situations to other people’s much worse situations, and going, “Phew, at least I’m not them!” 
Unless you really enjoy a bit of schadenfreude, it is thoroughly depressing. It also often makes you feel anxious that your situation may get that bad, and guilty that you felt bad in the first place. 
Those feelings are all extremely unhelpful.
So instead you focus on achievements. We’ve already done it in this post. I used to be able to only look at one piece of paper on my Wall of Joy, but now I have several and some photos and other objects too! Awesome!

It can be hard, especially when it’s a natural habit to want to compare it to how things were before you got sick. It takes practise not to do it, and I still struggle with it, but I am getting better. The psychological tools I mentioned before are a major part of the training for this.
One thing I have recently achieved is being able to draw again. 
I can’t tell you how much of a relief it is to be able to do that again. Drawing is such a massive part of who I am, that when I couldn’t do it it felt like a limb was missing. 
I didn’t talk about it at the time, because I found it too upsetting, but getting that back was like coming home.

I still struggle with the fact I can’t do as much as I used to, but that’s okay. This whole process is a massive learning curve, and I’ve come a really long way. 
All I want to do at the moment is draw and bask in it (that’s why this post has been so long coming), but I know I have to go slowly and lay down some rules about how I work now. 
I’ll get there. 

I just need to keep upbeat.

Friday, 28 August 2015

Apologies and Opinions

Hello again, my lovely loves,

Thanks for all the support I received after my last post’s discussion of my difficult doctor’s appointment.
As I mentioned last time, I wrote a letter to explain how I felt about the situation, and I’m happy to say Doctor B apologised!
I got a very nice letter from them actually, saying that they most definitely did NOT think my ME/CFS is in my head, and that their concern regarding hypnotherapy was just to make sure I’m supported during my illness, and while they honestly thought it would be better for me to go home straight after my appointment, it was clear they had been mistaken.
They also said that they had taken what I said on board and that they’d try to make sure no one had the same experience I did.

I don’t know about you, but I think it takes a lot of guts to respond so gracefully to criticism, no matter how well-meant or carefully worded, so I was happy to send a letter back saying that I was glad my worries were unfounded, and that I’d see them the next time I needed a home visit.

I know a lot of people thought I should complain, but to be perfectly honest, I’m just glad that we’re on the same page, and that we understand each other better than we did before.
There are a lot of people whose doctors aren’t nearly as understanding, or open to criticism or change (or even to the fact that their patient is ill), and the month between the appointment and receiving Doctor B’s letter has really shown me how much of a difference feeling understood can make to how you feel (and how well you handle your condition).
I’ve said before that plenty of doctors don’t believe ME/CFS is real, but what I’ve not said is this: hats off to those sufferers who deal with those doctors on a regular basis, because it is so undermining to feel disbelieved by a medical professional.
You lose a lot of respect from others when you become chronically ill, especially if you can’t work, and one of the hardest tests is not losing respect for yourself along with it. To do that without the constant wholehearted support of all those around you, medical or otherwise, must be so incredibly demoralising, and I salute you.
I also sincerely hope that, if the letter-writing route doesn’t work for you, you’re able to find a better doctor.

This whole debacle has called to mind a discussion I had with a friend not long ago bout a book called "It's All in Your Head: True Stories of Imaginary Illness”, by Suzanne O’Sullivan.
This book makes me very angry because, apart from its patronising and clearly incendiary title, it discusses at length how certain illnesses, including IBS and ME, are psychosomatic, despite their being plenty of evidence to the contrary.
In the interest of fairness, I must say it does make a good point that psychosomatic illnesses are illnesses, and so aren’t the sufferers fault or a choice they make, and that the current stigma around psychosomatic illnesses isn't justified.
But, given that stigma, it seems very irresponsible to label certain illnesses that way if there’s evidence to suggest that they’re not.
The Countess of Mar, who is part of the ME Association, had quite a lot to say on the subject, so I’ll link her response the book here.

Mine and my friend's discussion on the book, and the Countess’s article, ranged into the mind/body link, and the likelihood that psychological means could provide us with help or a cure. 
I agreed that there are some psychological elements to ME (as with most long-term conditions), and that psychological tools can prove useful in the everyday handling of ME/CFS, as well as in the monitoring of future warning signals for the prevention of relapse.
I am, however, rather firmly in the “it’s a medical condition” camp.
My friend, who also has ME, wondered why I seemed so set against the idea of it being psychosomatic, so after our discussion I set myself to thinking, and I realised what it was.

Believe it or not, my problem with the idea of ME being psychosomatic is not that it's a mental issue rather than a physical one.
If there was compelling evidence that walking over hot coals would cure me, then I would sign up for it.
I am willing to admit that there is a chance that I am wrong; that whatever triggers this illness may be mental, and that the physical evidence proven could still be a result of that. The mind/body link is incredibly complex and still isn't fully understood by people much, much smarter than me.
But I wonder if the people who insist that it is psychosomatic would extend me the same courtesy.

If I went to a psychiatrist who maintained the same belief as Suzanne O'Sullivan, and threw myself wholeheartedly into their therapy, and saw no significant improvement in my symptoms, would they be willing to hold their hands up and say, "well, maybe it is a physical disease after all"?
Or would they, as I suspect, simply say that I hadn't truly accepted the reasons for what was happening to me?
At what point would they be willing to consider they were wrong? Months? Years? Decades?

Because the nature of psychology is rarely so finite as to give you a yes or no answer, there is potentially no point at which this would happen, and in the meantime I could very easily start an unhelpful cycle of self blame over not being able to "accept the reasons why this was happening to me".
I know it could happen, because even now I often blame myself for not looking after myself better and getting ill in the first place.
It's taken me a long time to start forgiving myself for that, and the idea of putting that in peril seems like a very bad move to me.

It is, I concede, entirely possible that it could work, and I could be cured, so, despite my doubts, it's an extremely difficult thing for me to form a solid opinion on.
I don't like the thought of cutting off avenues, no matter how unlikely I think it is that they would help.
But even ignoring the medical evidence, ME/CFS was treated as a psychosomatic illness for years before I got it, and many of those people are still suffering.
You could say it was because of the stigma of psychosomatic illnesses, that they didn’t get very good objective treatment, and that that prevented them from recovery, but… how does that help them? Or me?

I think, mainly, I don’t think that treating it as psychosomatic will help us a whole is because that’s kind of how I treated it in the beginning, and it got me nowhere. 
I tried so hard to put mind before matter, to be the same person I had been even though I was so sick, had counselling and went on antidepressants. And I’m still here nearly three years later.
As I said to Doctor B in my letter, the only thing that’s shown me a steady and stable improvement is admitting I can’t be exactly the same person anymore, treating this as a physical illness and forcing myself to rest.
Provide me with compelling evidence that psychological solutions can cure (or even significantly improve) ME/CFS, and I will be there with bells on, but until then, I challenge you to keep an open mind.

In the mean time I’ve signed up to be part of a Biobank study looking into ME/CFS.
They’re actually still looking for both sufferers and healthy controls, so if you live in the Cambridge area, Norfolk, Suffolk or Greater London, you too could take part.
A bunch of my friends have offered to be healthy controls (lovely people) so if any more people in the London area want to sign up maybe we can coordinate you so the nice nurse can take your blood and information all together.
It takes around 45 minutes, you can’t have any major diseases other than ME/CFS, and you have to be 18-60. If you’re a control you can’t be related by blood to an ME sufferer, and if you’re a fellow sickie you have to have been sick for six months.

Email Caroline at with the subject as either “possible severely affected volunteer” or “possible control volunteer”.