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.

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!