Imagine
You're so incredibly lucky and fortunate without even realising it.
They say you only truly realise the value of things when they are gone, or only really miss things when they are gone.
Imagine waking up one day in a body that no longer works.
The normal begins, eyes open, light enters your bedroom, children are stirring in their beds, but then you try to get out of bed. The room spins, your head screams at you to lie back down. Every single joint in your body feels tight and sore.
At first you just think you have the flu, or perhaps even ate something you should have left. Getting out of bed takes all of your energy and you lurch towards the bathroom, hoping your feet will follow your head, like a toddler learning to walk. Clumsily manouevering around as little as possible so you don't spread the flu to your family you move between the bed and bathroom when necessary, spending the rest of the week tucked up in a darkened room, wearing an eye mask with the softest duvet you could find, the quietest music or television for background noise and trying to force yourself to eat and drink when you can, all the while wondering why you haven't got the rest of the flu symptoms- where is the runny nose, constant sneezing, fever, cough? But then a week later, as expected with the flu, you're up and about again. You almost feel back to your old self. Not quite the same, but almost there. Enough to fool everyone around you, even those closest, perhaps even yourself. So you don't seek any medical advice because that would be wasting the time of the doctor.
Your life carries on. You are noticing small changes on a daily basis, like the light on your phone screen now needs to be turned down to around 50% brightness and you need the TV turned away from the window or any reflections to avoid getting a migraine. You don't think much of that as you have had migraines on and off for years, it must just be another one of those phases.
You check your diet for any possible migraine triggers- nothing obvious.
Your stomach seems to be getting more sensitive to food again lately. Maybe that is down to stress? You have had IBS (irritable bowel syndrome) since you were a teenager and have been managing it well ever since. Still, to be on the safe side you go through the routine of recording all foods and drinks alongside any symptoms. There do seem to be a lot of patterns emerging from that. You realise the patterns indicate milk, egg and gluten containing foods. Surely that can't be right though- that would mean cutting out a whole lot of food. So you revert to the FODMAP diet for IBS, basically a food elimination and reintroduction diet. After a few weeks of having barely anything to eat you reintroduce the food groups you noticed the patterns with and see the same symptoms again. So you cut them all back out and feel better. Just to confirm you have an allergy and intolerance test carried out by a private company (because the NHS will only test you when the food has been in your system for the last six weeks).
So, you are a vegetarian (due to texture preferences rather than principles) with IBS who cannot eat Quorn, rich foods, spicy foods or too much fruit and veg who is now intolerant to all products containing cow's milk, eggs, soya or yeast as well as gluten. What on earth are you going to eat now?
With children who also have food intolerances you soon find a way to manage all of your dietary requirements and provide balanced meals for the whle family, but your food shop has tripled in price. You have to eat though so that money has to ocme from your clothing, hair and entertainment budget.
Time carries on, the children are all growing up. The teenage years are looming large for your eldest, then you have that same terrible morning experience once again.
This time you know it isn't anything you ate because you have been being so careful.
You know it isn't the flu because all of the other symptoms are missing again. But why is it that you have that awful zombie feeling all over again? You are feeling so lightheaded when you move, your joints ache and everything takes so much effort. You can't even lift your own head or arms up, never mind walking.
This time it lasts for around ten days. During that time your limbs feel as if they are made of cement. Your feet drag along the floor and you can't think straight. Even eating tires you out.
But again, you recover. But this time you don't get back to how you were before. This time is different. You are still left with an overwhelming tiredness. Not a tiredness from poor sleep or a late night, a tiredness from someone pulling out your battery. A tiredness that only allows you enough energy to walk a couple of hundred metres before being exhausted as if you had run a marathon. Even just standing up sends the world spinning and you reach to balance on anything close by.
A few weeks go by of you struggling to carry on before you give in and start to use a hiking pole to balance as you walk. Self esteem has now hit the floor but you are determined to recover and not let this flu like tiredness beat you. The walking pole becomes a neccessity. One you are glad of but also ashamed of at the same time. People start to look when you are indoors with a stick being so young, but you know that without it you couldn't be there so carry on as best you can, trying to ignore them.
After a few weeks of using the walking pole you realise you are needing it more and more, putting more and more weight through that arm when trying to walk. This is causing pain in your wrist and lower arm so you start to talk about and research alternatives. The concensus is a walking stick. Yes, a walking stick. You have that same image in your mind as me. An internet search brings up a range of sticks in different patterns and designs so you pick a butterfly patterned one that you don't think you have seen anyone local and elderly using.
Again a few weeks go by with using the walking stick and then the effort of holding the handle becomes too much. Your hand hurts from gripping the handle and a local care centre suggest using squash racket tape to soften it. This would be fantastic if it was more malleable and less bulky. A quick swap to an ergonomically designed but less funky walking stick, then adding racket tape to that after developing hard blisters on your hand and pain through your arm and shoulder from your terrible balance and you are ready to give up entirely.
At this point it doesn't seem wirth the effort f even leaving the house, never mind the shame you feel for using a walking aid of any description. But your daughters have friends locally and you need to help them safely cross the road to call for them.
The day comes when the couple of hundred meters decreases to a house width, then you struggle to cross the road and realise you need better support. Your right side is hurting when you walk now, you have hard skin around the heel of your hand and blisters where you have been holding the walking sticks.
The GP you speak to wants to run tests. More tests. You have had nothing but tests run by doctors since you were 18years old. They have done the fasting thyroid function and glucose tests more times than you can remember, each returning with nothing every time. Your kidneys, liver, iron, vitamin levels, white blood count, full blood count and more have all been checked and rechecked over the years. Every time someone has referred you to a specialist they have discovered something new, told you what it is and then sent you away, evn though that thing they diagnosed was not what was causing you the pains you were there for. The gastro team confirmed you have IBS, the gynae team first told you it was your body's reaction to being raped and to having a miscarriage and meant you were unable to have children any more, but then after your next child was born they conveniently forgot this and diagnosed two further gynaecological issues after you had a private scan carried out to make them listen to you. The neurlogy teams have seen you over three times now and just keep saying it isn't MS and you have to learn to live with your symptoms. The rheumatologist confirmed what your GP told you and now they are playing ping pong with you and the neuro team. Meanwhile, not satisfied that the NHS teams were getting anywhere or even listening to you whislt your symptoms continued to deteriorate you have had private MRI scans carried out and had further diagnoses as a result of these.
Since first going to see your GP you have gone from being an outwardly healthy looking young person to a tired but still outwardly healthy mum of three children, to needing a walking stick, to using a rollator, to being wheelchair bound with intermittent times of being bed bound and housebound for periods of time depending on flares in your symptoms.
Your current symptoms, that have gone unanswered by any consultant or GP include tremors when you stand, inability to control one leg, tremor in one arm when you try to use it, migraines and headaches on the sides of your head, difficulty swallowing and the feeling of a lump at the back of your throat, broken sleep due to pain and the need to urinate at night, swollen feet, swollen hands and forearms, tingling in your arms, legs and face, numb patches on your legs and feet, neck pain, back pain, muscle pains all over your body, stabbing pains in random places all over your body at any given time, electric shocks running down your limbs, pain in your ribs on breathing at times, pain inside your jaw, face pain from eating and emotions, waking with stiff and painful joints, falls from the sudden shoot in heart rate when changing positions, fast heart rate, terrible memory, poor concentration, jerky movements at random times in your legs, arms and torso, sudden need to urinate, pain that shoots down your back when you look down, depression and so much more that just all seems not to matter to medical professionals.
You are still a few years from the big 4-0 and seriously wondering if you will make it, and if so in what state.
Your medication list and current medical issues list are both worthy of a book deal.
The effort of lifting your arms to brush your teeth or your hair is so much now that you have to pick one thing to do each day and rely on other people foe the rest. You have finally had enough of pushing yourself to shower daily and being wiped out from the effort of that and then drying yourself and dressing that you have asked social services for help. You can't even shave your own legs any more withough help.
This is how I am now. I am in a wheelchair all of the time because I cannot even stand anymore, let alone walk. Memories flash up on my social media from years gone by, even this time last year, and I cry every single time because I miss my life.
Since needing to use a stick I have not had a break in my symptoms. Not even for a day.
When I wake in the morning (not the 3am toilet wake or the 5am toilet wake), I cannot move at all. It is like I have been paralysed. I lie there for a while pretending to still be asleep, then I gradually get the energy and ability to move my arms enough to sit up in my electric adjustable bed. My fingers don't work at all and my joints are all swollen and so painful and stiff I may as well be made of stone for all I can do for myself. My carer gets my breakfast for me so I can take my tablets (they make me sick on an empty stomache). I really need to be fed but i am not ready to give up on that entirely yet (don't tell my carer that). I drink using a takeaway coffee cup style beaker with a metal straw and have my tablets put into my mouth one by one, ending with the dissolving painkiller. Then i have to wait for the nausea to pass before I can consider either wiping and getting dressed or having a shower and getting dressed. Either way I need help and am exhausted by the end of it.
Some days this is as far as I get, then needing the rest of the day to cool off from my cool shower or rest up after the energy has all been used.
Other days I accept more help and get further than that. I love to get out of the house, even for a drive, but just getting into and out of the car takes so much energy I have to decide if it is worth it or not, thinking about what else is coming up that day and the next 2 days.
The kitchen counters in my home are all average height so I struggle to make myself any food or drinks because I cannot lift my arms up enough to do it. I have been seen trying to prepare food on my lap, but that is far from ideal (or safe). I am waiting for the occupational therapy team to come and reassess my needs here, waiting for the rheumatologist to see me again as I suspect I have arthritis with the way my joints are in the mornings and overnight. I am aiting to see my new GP to arrange my medications and hopefully talk about altering them as they are no longer effective.
I am also waiting for my new wheelchair to come. I was using a tilt in space chair which meant I could stay out all day with my family, but it is too wide and too cumbersome for me to move independently and that was really getting to me. I felt like a thing rather than a person and was being parked up and left so decided that when I could I would purchase a lightweight self propelling wheelchair. I plan on then asking my GP to refer me to wheelchair services to see if they will assess me for a powerchair for the days when I cannot propel myself at all. I know they are very strict on power chairs being for people who cannot self propel at all, but as I can only self propel on smooth surfaces like lino or tiles and only on the flat, and can't even do that at night or first thing in the morning, or when I am having a worse day then I hope they will help. But I will have to wait and see.
There is a lot to wait for and all the while my symptoms continue to increase.
I honestly find it extremely hard to cope with. I find myself far more emotional than I used to be and any glimpse of how my life should be now sends me into floods of tears. I now know it is health grief and to be expected, but there is a waiting list of 5months to see a counsellor about it, by which time I don't know where i will be physically or mentally.
The feelings of guilt as I see my children missing out on things we would have done before this, them having to do things without me, having to do things for me or instead of me and seeing my husband having to try and do all the housework I used to do whilst I can't do much to help is awful. People talk about young carers and carers and how they need a break from their role, but I wish more thought would be put into the needs of the person with the disability needing a break too. It kills me everyday to be stuck in this life. I keep searching for respite for myself and have decided to enrol myself in a local day centre one day a week for these reasons. Ideally I would love for us to be able to go somewhere as a family for a week with other people there to care for me so my family gets a break, but we can also enjoy the time together. It just isn't that simple.
I joked with the care assessor this past week that in an ideal world I would win the lottery and build an extra room for a full time carer to live in to help us become a family again rather than a family with a mum who they all have to look after.
My life was always so busy. I was running about here there and everywhere every single day, taking the children to their activities and groups, finding new and exciting opportunities for them, fighting the professionals for my children to experience everything they were entitled to (they all have autism and sensory processing disorder) and always joining in with them where I could. We had started horse riding lessons, worked at a local care farm together, went to the gym, play areas, walking the dogs and anything and everything we could. The change from that life to this is astronomical.
It isn't being in the wheelchair that makes my life hard or sad, the chair means i can get out of bed and out of the house, it is more the little things that others don't notice. I can't go into that now because I will have tears all over my keyboard but perhaps another time.
For now, just consider this is you. I never dreamt for a second that I would end up like this at my age and so quickly.
My first episode of this flu like crippling condition was when I was in my teens. I can remember the GP coming out to see me at home, doing blood tests (quelle surprise) and sending me for my first MRI scan (terrifying as a teenager). It didn't show anything but I now they were worried about a stroke at the time because I had such a terrible memory and weakness.
The next time I can remember was not long after having my first child. I got sick whilst on a short break away and it had to be cut short. I couldn't lift my head off the pillow, fell when I tried getting out of bed and was weak for around ten days again. I remember the GP coming out again then too, doing more tests and saying it was a migraine.
I always caught colds, viruses, sore throats and any illnesses going whilst I was in school. I would be sent back into school as soon as possible though and had to deal with it with medication.
I also remember having times in high school where it felt as if I wasn't really there. It was always an odd, disconcerting feeling and I would miss things.
Looking back I wish things had been pushed harder when I was younger and perhaps things could have turned out differently, but I will never know now.
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