When You Just Can’t

It’s been one of those weeks where things don’t go according to plan. I had a dishwasher fitted last weekend, a concession to try and make life easier. But on Monday I discovered the first of several leaks, one of which leaked through the ceiling of the floor below, leading to the Plumber needing to make three more visits over the course of the week. Even now I’ve still got a small hole in my sink which will need to be plugged. What was supposed to make life easier turned into a monumental headache. Oh the irony!

I reached points on several of those days where I just didn’t want to deal with it anymore. It’s hard to run a house and stay on top of everything on your own whilst chronically ill. It makes me long for a partner to share the load with, but that seems like a distant dream. I’ve been trying online dating, using a Christian app to try and find someone who also shares my faith. But the Christian world is very small, too small, everyone knows someone I know. I’d been chatting to a guy for a while who seemed nice and I had a lot in common with, we were due to meet this week whilst he was in the area. However, he backed out after chatting to someone ‘we both know’ and deciding he couldn’t give me what I needed.

It was a classic ‘it’s not you it’s me’ message which on face value should be reassuring. The problem is I have no idea who he talked to about me, it’ll almost definitely be someone from work. It’s likely that person will have known something about my mental health journey, which I hadn’t shared with him because that to me is a face to face conversation. I don’t know what they told him. I found it unsettling partly because it feels like I lost the right to tell my own story in my own words, a loss of control. But mainly because I’ll have to walk around work not knowing who knows what about my personal life.

It’s added to the volume at which I can feel my body clock ticking. There’s nothing I want more than to have children of my own and at 31, compared to many of my peers, I am already running late. And I can’t help but wonder is anyone going to take me on with all the baggage I come with?

All of this feels like a bigger deal because I’m still unwell. I’ve seen no improvement in my fatigue in the six weeks since I started my Thyroid medication. I’m so tired that there’s often nothing left in the tank. I’ve handled the situation this far with what resembles stoicism. I don’t know if I’m putting on a brave face or just disconnecting and not processing what’s happening. It feels like my life is passing me by with me barely an active participant in it. I’ve lost months to this haze of exhaustion and brain fog and the end isn’t yet in sight. I miss my job. I’m frustrated that this time off will put me even further behind my peers at work. There were things that I wanted to do this year which now seem unlikely. And it’s the time of year where everyone is going off on holiday creating a feeling of being left behind. I want my life back.

I’m struggling with my mental health, both the depression and the eating disorder, fuelled by the isolation and weight gain caused by my under active Thyroid. I’m angry with community mental health that have discharged me to handle this alone. Frustrated that I’m not under the care of an Eating Disorder Service that I can call up for advice and reassurance. The system is broken but somewhere along the way I’ve internalised that and I feel like the one who’s broken.

It’s been one of those weeks where I don’t want to adult alone any more with everything on my shoulders. I don’t want to have to fight so hard for support. To be the one who has to pick up the phone. I don’t want life to be this hard all the time. I just want to rage at the world that it’s not fair. Can it just be easier, please?

Some days you just can’t and sometimes there isn’t anything you can do about it. It’s okay to not be okay. Okay to get that ready meal out of the freezer for dinner. It’s okay to let the house be a mess and delay doing washing because you just can’t face it. It’s okay to give up for a while and go and take a nap.

These days will pass if you can just get through them. If you can batten down the hatches until the storm passes. There’s hope that tomorrow will be a better day. And I believe in a Jesus that is with us in the heat of our anger, with us in the darkness of despair, sat with us in the dust and the dirt of life. I still believe He can redeem even our most difficult days.

Managing Mental Illness Alongside Physical Illness

Managing your mental health when you struggle with mental illness is a bit of a mine field. You have to be constantly on your guard, proactively pursuing self-care, connection and community. There are so many plates to keep spinning and often not enough support if one of those plates drops. Managing your mental health when you also have a chronic physical illness is so much harder. Fatigue or pain or other symptoms grind down your already fragile reserves until there simply isn’t enough energy or attention to go around.

One of the hardest parts is that often what you need to do for your mental illness recovery is different from what you need for your physical recovery. To stay as mentally well as possible I need to get out of the house each day, see friends and keep busy with things that help me feel productive. Work is an essential part of this, giving me structure, purpose and human interaction. However, my current level of physical fatigue demands me to be off work, resting as much as possible, barely leaving my sofa. It has shrunk my world both in distance and the people who inhabit it. It would rather I napped all day and hid from the world.

It also gets difficult when a symptom of your physical illness interacts with a mental illness. For me it has been discovering that my under-active Thyroid has caused weight gain. This is a common side effect but as someone in recovery from Anorexia it’s deeply distressing. My food consumption hasn’t increased, I’m eating no more food than my dietitian recommended to maintain my weight. My weight should be stable now around my set point weight. But it’s not. I’m now at the very top end of what’s considered to be a ‘healthy’ BMI and my eating disorder is having extremely unhappy about that.

I know I shouldn’t be terrified of gaining weight. There’s more to life than what the scales say, I wouldn’t judge anyone else no matter their size. But I am completely and irrationally consumed with the fear of being overweight. It’s a sick to your belly fear, the kind you can’t rationalise yourself out of. A fear that distorts what your eyes show you and convinces you everyone else can see it too. It’s like I can see my stomach ballooning before my eyes, feel myself getting bigger by the second. I know it’ll take all the grit I can muster to not restrict my food and stick with recovery. To remind myself that this isn’t forever and the medication should stabilise things.

It’s not the only psychological repercussion of this fatigue. I can feel my mood slipping and depression trying to sneak back in. One of my early warning signs is when my empathy gets leaky. By that I mean that I get overwhelmed by other people’s emotions whether someone I know or simply a television character. I care too much and I can’t control it or take the step back I need. It’s a reminder that maintaining my mood takes work and it’s not work that I’ve always been able to do with this much fatigue.

I wish I could find a way to perfectly manage my mental and physical health needs. It feels like somewhere there should be a magic solution that holds them both in perfect harmony. Every decision will have a positive impact on one area of health but often a negative impact on the other area. The best you can hope for is to get to the end of the day with them cancelling each other out. But when you add in all the unexpected variables of life it becomes next to impossible. You will always make decisions that prioritise one over the other, you just have to make sure your priorities change when they need to.

If you’re struggling with mental and physical illness right now and it’s feeling difficult know that it’s not just you. This is such a difficult path that you and so many others are walking. It’s okay to cut yourself some slack and acknowledge both the difficulty and the strength you show doing battle each day to overcome this adversity. All we can do is the best we can with the resources we’ve been given. Some days that won’t feel like enough. On those days we must remember to hold out kindness and compassion to ourselves. We can spend so long chasing perfection that we lose track of the steps forward we are taking. Each day a little further along than the day before.

Dear Community Mental Health

This week I was discharged from my local community mental health team who I have been under for around two years. I’m still too fatigued to work, with my mood steadily dropping, struggling with daily life. Does this seem like a wise point to be discharged from mental health support? I would vote no. But then it wasn’t my decision.

For those of you new to the blog I have anxiety and depression and am in recovery from Anorexia. This is paired with ME/Chronic Fatigue Syndrome and hypothyroidism which is wreaking havoc with my physical health currently. My depression is treatment resistant. I have been on countless medications, some I haven’t been able to tolerate for more than a few months. Others work for a reasonable length of time until they inexplicably stop working. As such the combination of medications I am currently on is complicated, GPs generally don’t want to go near it. This means that to change my medication I have to be referred to Community Mental Health. I’ve been through the system several times by this point.

Notebook illustrated by Sonaksha for The Blurt Foundation

The system is not designed for me. My depression is high functioning which means I present as more well than I am. Each follow up letter from appointments will note my appearance, waiting for the self-neglect that ‘should’ accompany a worsening of symptoms. It will never come, that is not one of my warning signs. Rather than focus on the physical I rely on mental health professionals listening to the words I say. I know depression well by this point, we have done battle many a time. I know when I’m in trouble and I know when I need help. But as a ‘mentally ill’ person my words don’t carry much weight.

Combined with this the current emphasis is on group therapy. I understand why the NHS would choose this given the long waiting lists and number of people needing help. There’s also evidence that groups can be more effective for some people. But as someone with a ridiculous amount of empathy being introduced to a group of strangers also going through a difficult time doesn’t help me. Inevitably their emotions get tangled up in my own, I get overwhelmed and can fall into the role of supporting others rather than looking after myself. It is far more exhausting and draining for me than it would be one on one.

Groups are also currently only running online. Having done three months of ‘Compassion focused therapy’ with a group over Microsoft teams I can testify that it doesn’t work. You could write a sitcom about all the technological difficulties, that person that no one can hear, pets popping up at awkward moments, people unable to get into the call or dropping out mid-sentence. A group video call is also a poor reflection of being in a room together, you’re forced to look at everyone all at the same time instead of just the speaker, your every expression is under scrutiny. You also don’t form the relationships that you might build connecting with people in person. Effective group therapy relies on participants feeling comfortable to be vulnerable with each other. If the trust isn’t built amongst the group then that vulnerability doesn’t happen. I would normally bite the bullet when it comes to sharing, but in this online group I never felt comfortable.

But my main frustration with community mental health is that they aren’t able to offer the long term support that those with Chronic mental ill health need. Being discharged this week means that if I need my medication changed in the future I have to be referred again. This process apparently shouldn’t take more than three months, but that feels like a long time when you’re not coping. To reaccess the service I have to be reassessed. Psychiatric assessments are gruelling and have at times for me been traumatic. You have to wade through the darkest parts of your past with a stranger from birth to present day. This is all to change a medication that was prescribed by the same service months ago. It’s an unnecessary trauma and inefficient to say the least. I’m honestly not sure if I could find it in myself to go through that again. And would that affect my willingness to access help in the first place?

Partly this is an issue of underfunding. I’m sure the service is full of people who want to do better for their patients but are at the mercy of targets and waiting lists. But I think it’s also an issue of design. A decision, whether right of wrong, to focus solely on acute episodes rather than the long term wellbeing that can prevent these episodes. Managing chronic mental illness successfully is much harder without specialist support, especially for complex or treatment resistant cases. Having someone monitoring and advising means they are in a position to provide early intervention to prevent the situation deteriorating to crisis point.

All this could be avoided by keeping long-term patients on their books and doing annual reviews. These reviews would likely take less staff time and money than the reassessment process and would mean support could be accessed quickly if needed, reducing the need for crisis services and urgent care. Knowing support is available if needed could even help patients to stay well rather than be faced with the isolation of being released out into the world to cope on your own.

Having been through this before I insisted that I had to have regular GP reviews in place before being discharged. I am fortunate that this has been actioned although I worry that with the pressure GP surgeries are under that these appointments may quickly fall by the wayside. Whilst having the touch point and emotional support will be helpful, as explained before there is a limit on what GPs can do for me practically apart from act as door keepers to more specialist support.

I would like to stop this revolving door of having and then losing support. I want a service that has enough funding to be able to treat and care for patients with chronic mental illness over the long term. One that can recognise depression in its many forms. We need a service that can be tailored to individual needs rather than a one size fits all approach. I shouldn’t have to go through a traumatic assessment process every time I want to alter one of my medications. I want a system where the emphasis isn’t on the patients to fight for the support they need.

I have been discharged at a point where I feel vulnerable, without the structure and support of work in place. I have been discharged whilst I am still on one medication that I don’t think is helping and don’t want to be stuck on long term. I’ve been discharged having only had a few months of stability before my physical health declined and in turn my mental health. I am in recovery from Anorexia with my thyroid condition causing me to put on unnecessary weight even though I’m following the meal plan designed for me to maintain my weight. This is a recipe for at best anxiety and distress and at worst restriction and relapse.

I hope to never need the services of community mental health again but realistically that’s unlikely. I only hope that if we do meet again that they will have found a way to put patients first. For now I will keep fighting for my own recovery whether alone or with any allies that will join me. Sometimes you have to get up, shake the dust off and move forward with all the strength you can muster. Or in my case take a nap and begin afresh later. One of the two.

The Lockdown of Chronic Illness

I’ve had quite a few ‘I can’t do this’ moments this week. I’m eight weeks into being off work, three weeks into taking the Thyroid medication that should help me feel better. But I’m still not seeing any improvement. My days are dictated by a fatigue that feels all consuming and overwhelming. I just want more energy so I can re-engage with my life again. It feels like I blinked and someone stole two months away. I’m not sure how much more time will go missing. Maintaining good mental health in the face of this fatigue feels next to impossible. Life is feeling hard a lot of the time.

It was my birthday on Thursday and I was determined to mark the occasion, energy or no energy. The last two birthdays came in the midst of some kind of Covid restrictions, limiting how I could interact with my friends. So I made the most of being able to socialise indoors and went for brunch with a friend in the morning and had some friends over for pizza and board games in the evening. In between times I was resting and attempting to nap and conserve energy. All in all it was a lovely day and a good reminder that I have lots of amazing people in my life. I am very grateful for it.

The post-birthday crash has been less fun. It’s a difficult mix of the inevitable emotional dip that comes after something you’ve looked forward to is over, along with physical fatigue determined to punish me for doing more than lie on the sofa all day. I’m finding it hard to re-centre myself and stay present in this moment without worrying about the future or get stuck in the frustration of the past. I know I have to keep playing the waiting game for my body to heal but I’m finding it hard to be patient. I want to feel in control but I am no where near the steering wheel of this particular situation.

Living with chronic fatigue and other chronic illnesses is very much like being in your own personal lockdown. The comparison was made many times during the pandemic but this is the first time I’ve fully felt it myself. My world has become very small, limited to the short distance I can walk or justify getting a taxi to. Mostly I leave the house once a day for my brief daily walk or to meet up with a friend to try and stay sane. The majority of my day is spent alone or at least just me and the cat. And whilst I love my cat she is no substitute for all the team work, support and laughter I used to experience going into the office each day.

I feel trapped, not by government restrictions but by the limits of my own body. Some days I’m dependent on deliveries to get the supplies I need. Every activity is a calculation of risk and mitigation factors, but rather than worrying about the virus and infection I’m thinking about repercussions on my body, the cost of under or overdoing it. How much energy will I use? How much recovery time will it take? How much will I need to nap to mitigate the damage?

The big difference is there are fewer things to distract me. I don’t have the stability of work right now which has always been a leveller for my mental health. I’m mostly too tired for any of my hobbies even the ones that would normally be fatigue friendly. Even television can be exhausting. I am bored despite not having the mental or physical capacity to do much. Every day follows the same pattern and is dull and repetitive.

With the pandemic there was no fear of missing out because your friends were all equally locked in their houses doing very little. But this is my own personal lockdown, my healthy friends and family are free to do what they want. I am watching the world whizz past me as I move in slow motion. I have a whole new appreciation for all those who have spent years in this kind of health lockdown. I don’t know how you keep going when the months stretch into years.

If you’d asked me three years ago if I would have got through all the lockdowns of the pandemic I would have said definitely not. But I did. And that gives me hope I can get through this one too. I have to hold onto all the things I can do now which I couldn’t do then. The simple joy of having a friend round to watch a movie, sit with a loved one over coffee or lunch, or even being able to sit around strangers in the café that is five minutes from my house.

It’s so easy to slip into bitterness or resentment. But I definitely don’t have the energy to carry that around with me. I have to keep trying to trust the God that is in control. To believe He knows what He’s doing and will bring me through this. That there can still be purpose in this weary season. Hope, faith and love can never be locked out.

Fatigue

I am still permanently exhausted, we’re now seven weeks into being off work and I am more than a little frustrated. I’m two weeks into starting Thyroid medication to sort out my under active Thyroid which I’m hopeful is the cause of this fatigue. But when you throw ME into the mix it gets more than a little bit complicated, every now and again it pops up with some more symptoms to make sure you haven’t forgotten about it. ‘How much better is it going to get?’and ‘how long will it take?’ are two questions that can go round and round my head on loop.

I’ve never known fatigue like this before. It’s as though every cell is weighed down, saturated by it. There’s a suffocating heaviness to it that pulls you down as you try and tread water in a vast and unfamiliar ocean. It clings to you like oil that you can’t wash off, coating every part. It feels endless and overwhelming.

©️Frog and Gnome

Time speeds by even when you’re barely an active participant in it. Months slip away in a haze of brain fog. The days pass in a blur but the nights linger, time stretching in the wakefulness between dreams and nightmares. There’s a kind of rhythm to the days, the napping, low key socialising to avoid my mood dropping, regular attempts to fight off boredom. But it feels like living life in some kind of purgatory. Trapped somewhere between awake and asleep, between functioning and disintegrating, patience and frustration. You wonder if there’s insanity in doing the same thing day after day and hoping for a different outcome.

Emotions churn just under the surface, barely contained or controlled. Every little thing feels like the end of the world: a smashed egg, a series finale, the cat in a mood over something. The small things loom large because you lack all perspective. The mountains and the molehills become hard to tell apart because after all both seem insurmountable right now.

You get to the end of the day and just feel sad, because all other emotions take energy. Optimism takes energy, hope, contentment, joy. Even anger can’t be maintained when you’re so spent. It’s like you’re grieving the dying of the light, all the time you won’t get back, what was and could have been. Too drained to make the tears fall.

I’ve started using the ‘Lectio 365’ app and find the night prayers particularly soothing for this fatigue fuelled sadness. This week I was struck by these words of Thomas Dorsey which you may well have sung as a hymn:

“Precious Lord, take my hand, lead me on, let me stand, I am weak, I am worn; Through the storm, through the night, Lead me on to the light: Take my hand, precious Lord, lead me home”

Thomas Dorsey

Maybe it sounds like foolishness to some but I still believe God is with me. Sometimes I can feel Him in the quiet stillness of my mind, the warmth of the sun on my skin, the kindness of friends. There’s a peace that comes from knowing you’re not alone. And as I look out the window at the blissful sunshine I’m reminded that life is made up of seasons. No two moments the same, each day bringing the possibility of change. Maybe I can find patience in the waiting. Perhaps these months are deepening my empathy, growing more compassion for myself and others. There may be more lessons here that my tired brain can’t yet see.

If We Don’t Know What’s Broken We Can’t Fix It

I’ve been signed off work for five weeks now. Five weeks that have gone by in a blur of fatigue, forced nap schedules, frustration and boredom. I’ve put it down to a bad flare of my ME, a level of physical exhaustion that I couldn’t push through any longer. So I’ve been trying to rest the fatigue away, whilst still seeing enough people to stay sane and doing a bit of exercise to avoid deconditioning my body. I’ve been kidding myself that I’ve been getting better, desperate for some sign of progression, anxious to get back to work as soon as possible, constantly analysing every fluctuation in energy levels.

But it hasn’t been getting better and this week I found out why. I have an underactive Thyroid with antibodies to suggest it’s an autoimmune issue. And it makes sense that it’s not getting better because it’s actually deteriorated since my last blood test two weeks ago. I’ve been prescribed medication which I started yesterday. And now we’re playing the waiting game.

My initial reaction was complete relief. I appreciate that sounds strange to be relieved to get a diagnosis of a condition that will require lifelong medication. But the thing is there is nothing reassuring about being told all your test results are normal when you’ve felt ill for a long period of time. And I’ve got a lot of experience of that.

I got my ME/Chronic Fatigue Syndrome diagnosis in 2016 (or actually a re-diagnosis). It’s a diagnosis you get when they’ve run out of tests to do but you’re still unwell. It’s a diagnosis that comes from having a certain number of persistent symptoms that match a list which it feels like covers just about everything. It’s not a diagnosis that comes with an explanation or a treatment. They don’t know what part of your body is broken or how to make it better. Giving you a label allows you to be put into a box which means that no one is looking for answers any more.

I’ve lost count of the number of blood tests I have had over the years. Bar a few vitamin deficiencies they’ve almost always come back clear. The problem is that being told ‘the tests are all normal’ feels a lot like being told there isn’t anything wrong with you, that we don’t believe you or it’s all in your head. It’s isolating trying to make people understand and recognise an illness that is invisible, that comes without a positive test result. Every time you talk about it with someone you wonder if they also think you’re making it up. And on your darkest days you doubt yourself too, wondering if it’s all in your head, perhaps it’s normal to feel this rubbish, maybe you’re making a big fuss about nothing.

I’ve been lying on the sofa each day beating myself up for not getting better quickly enough. I’ve been blaming myself for my own inability to push through and get back to work, as if a complex physical illness could ever be solved by ‘mind over matter’.

I’m relieved because this is the first time someone has told me: this is what’s causing your fatigue and this is how we make it better. Relieved that I have something simple to explain to work, friends and family, that also explains why I haven’t been improving. Something that doesn’t feel like my fault. I’m relieved because I can believe I’m going to get better and get back to some semblance of my normal life. I’ll admit to also holding the hope, despite old test results to the contrary, that maybe my ME has been caused by my Thyroid all along. Maybe this treatment could improve my general level of fatigue.

But as the initial relief faded a sense of sadness set in that was more than just the reality of more medication and more side effects. It was realising that I have become the kind of patient doctors care about, someone with something concrete and fixable. The first time in years I’ve spoken to a doctor who seemed genuinely interested and invested in getting me better. And in realising that it hit home how little doctors have cared before, how much those of us with ME diagnoses are stigmatised and ignored, left in our boxes with symptoms that can be relentless, scary and unbearable.

Whilst I’ve been off my fatigue has been significantly worse than what is normal for me, but apart from that my symptoms haven’t really changed. What’s changed is it feels like they’ve now become more valid, something to be listened to. And it’s not just how they’re perceived by the outside world, I think it’s also how I view them. If the tests came back clear and this was solely an ME flare then that shouldn’t mean I’m less deserving of taking the time I need to recover. I shouldn’t feel like my illness is more valid because of numbers on a blood test. But I do.

And that makes me sad, not just for me and what I’ve lived through with this illness, but for everyone else with ME. Every person who has no idea what’s broken in their body and so it can’t be fixed. People who like me have been so beaten down by stigma and ignorance that they struggle to validate their own suffering. All those with more severe ME who struggle to access benefits and support. Those who long for an answer for why they’re ill, an answer that isn’t coming.

It’s not good enough. With an estimated 17 million people affected by ME worldwide it is shameful that we still don’t know what causes it and how to fix it. We’re so far from even knowing if we all even have the same illness or, as I suspect, ME is currently an umbrella term that captures several illnesses with similar symptoms and different causes. There has been embarrassingly little research, decades of neglect and denial. Treatments which at best treat ME like a mental illness and at worst treat it as something you can exercise away, making many people worse. And it’s still going on today, with funding and resources being taken from already stretched Chronic Fatigue Services to support those with long covid. We have to do better.

Today a large part of me is incredibly grateful to have an explanation and treatment for my current symptoms. But I’d be lying if I said there wasn’t a small part of me thinking it’s come too late. Six years too late.

To Be Held

When the news brings only disaster,
Images of war, injustice and pain,
Where love and truth are luxuries to be discarded,
And you wonder where is your God?
I am on the ground with all who suffer,
Working through those who are my hands and feet.

When you look in the mirror and feel only hatred,
Wanting to wash every blemish away,
When no diet or makeup will soothe you,
And you long for your body to change,
My scarred hands will hold yours as I whisper,
“I gave you a beauty all your own”.

When your body is sick, hurting and worn,
And the weariness seeps into your bones,
Through days where pain is your constant companion,
Where the road ahead looks exhaustingly long,
I will carry you upon my shoulders,
Aching with you until all is made new.

When your failures overwhelm you,
Your hands cut from shards of broken dreams,
On the days when all you can feel is “sorry”,
Your flaws magnified for all to see,
I will be there whispering “you are enough”,
“My child, shame doesn’t live here any more”.

When you lose what you once dearly loved,
Your life splitting to ‘before’ and ‘after’,
Watching the world crumbling to dust around you,
Sorrow cutting into your heart,
I am with you bringing beauty from ashes,
There weeping with you among the ruins.

When the shadows build phantoms haunting the dark,
Fear like sweat lingers upon your skin,
Every worry looming insurmountable peaks,
And you wait and long for the dawn,
I will be there at watch beside you,
Holding out light to scare the nightmares away.

I could play you the song of the stars,
Weave a symphony of all that is and will be,
I could give you knowledge of secret things,
Of your thread in the great tapestry.
But tonight I know you need simply be held,
Find refuge in my loving arms.

The Guilt Trap

I am still off work with an ME flare, progress is painfully slow. Some blood test results this week showed my Thyroid is potentially not working properly, which may be a result of one of the medications I’m taking. On the one hand if this proves to be the case it feels like good news as this could explain why this flare has been the worst I’ve ever had. It’s something that sounds like it can be fixed even if that fix is enduring the side effects of medication withdrawal. But I’m still stuck playing the waiting game as before we can do anything my doctor is insisting we have to redo my blood tests in two weeks time. So I keep waiting, waiting to feel better, waiting for answers, waiting for the energy to do many of the things I enjoy.

I’m finding this much time inside my own head, without the distraction of work, is hard going. It can make you more aware that your mind is not always a positive place, it can be easy to get stuck in the downward spiral of negative thoughts, frustration and hopelessness. This week in particular has highlighted that I still have a big problem when it comes to one thing: guilt.

I’ve always had a high capacity for guilt. Part of this is historical, somehow when I was small and struggling with ME for the first time I got it into my head that it was my fault. I allowed a chasm of guilt to open up inside 6-year-old me and even when the initial trigger was brought into the light and dealt with I still had this hole which guilt could seep into. My brain was used to it, expected it to be there, didn’t question it’s veracity. I’m also an empath and probably what would be described these days as a ‘highly sensitive person’. I feel things deeply and can carry the weight of the world and other people’s problems on my shoulders.

It’s true there are many incidents throughout my life that I have messed up and let people down, been judgemental or self-centred, careless or cruel. It’s right that I should feel some guilt when I realise I’ve done wrong, a guilt that motivates me to apologise and make amends. But even when the incident has disappeared into the past, apologies made and the other person has moved on I still haven’t forgiven myself, awarding myself a life sentence for each failure.

A lot of the time the guilt is misplaced and isn’t even based on something I’ve done wrong or been responsible for. I can feel guilty for other people’s suffering even though I’ve done nothing to influence it. Guilty that someone is stressed or overworked, even though that’s outside of my control. Guilty for those bereaved when my family is whole and intact.

I am struggling at the moment because a lot of how I manage this guilt has to do with working hard to not let people down. I throw myself into my work, try to be the person others can rely upon, aim to be thoughtful and compassionate. Right now, with so little energy, I’m not able to do those things.

I feel guilty for not being at work, guilty for not being able to manage my ME to prevent needing time off. I feel guilty trying to navigate how to get better, guilty every time I miss a nap, even though I don’t know whether or not I should be napping. Guilty for leaving the house and seeing friends, for doing anything other than lying in bed looking at the ceiling all day, even though seeing people is essential to my mental health. I feel guilty that I’m not getting better as quickly as I hope, guilty that I don’t know how long it’s going to take.

I know that my faith should protect me from this guilt, believing that Jesus died to cleanse me of all the things I’ve done wrong, to give me new life and hope. But some of the guilt I feel gets tied to my faith. I feel guilty for not being the kind of Christian I feel I should be. I feel guilty that I’m not attending church in person regularly or guilty that when I do go I am too anxious or tired to talk to anyone. I feel guilty for not praying and reading my bible more, for not evangelising. For every homeless person I walk past on the street, every catastrophe around the world I’m not donating towards, for having a roof over my head and food in the cupboard whilst others do not. Doing ‘good deeds’ doesn’t assuage the guilt, it’s never enough.

And this weight of guilt and condemnation is coming from me, there’s no external voices piling this on my shoulders. I have become my own judge and jury, passing harsh sentences on myself. I wear the guilt like shackles, it binds me so tight that my chest constricts as though every failure, every sin, every misdemeanour is pressing down on me.

This is not what following Jesus is supposed to be like. He said His yoke is easy and His burden light. He condemned himself for us, taking all our guilt and shame with Him to the cross. He came to free us from the pressures and expectations of the world, to live in the light of His grace and forgiveness. I know this. And yet I still find it so hard to lay the guilt down.

Sometimes you have to realise that you’ve tangled yourself up in the chains, they aren’t locked in place. Some days you can spend so long rattling the bars of the cage that you don’t see that the door has long since been open. And I know it’s not as simple as walking out literally or metaphorically. Like anything worth doing it takes determination and discipline. Catching those thoughts, interrogating those feelings. Telling yourself truths that may not always feel true.

I saw a video on facebook this week of a man rescuing a mouse from a glue trap. In order to free it he had to carefully and persistently rub oil into it’s fur, in all the places caught in the glue. To me it’s a picture of how we get out of the guilt trap. We have to cover ourselves in the oil of God’s love and forgiveness, massage it into our hearts, to re-surrender our guilt to Him every time it tries to get us stuck. It will be messy and hard work, taking time and patience. At the start it may look so impossible that you want to give up but wait and see what God can do.

Feelings so often lie to us. I feel guilty right now but I am not guilty, that is not a part of my identity. I am forgiven, I am loved, I am unique and valued. I am free to fill the hole, where guilt has lived, with other things. In time, guilt will have no home here any more.

Watching the World Go By

I’m still very much in the middle of a ME flare up. Whilst I am trying to keep taking a short walk each day and continue with gentle socialising with friends my world has got much smaller. I made it to church today with the help of buses that I wouldn’t have normally needed to take. It was too much but it had been so many weeks since I’d been there and I really wanted to go. As the service started I felt the headache that warns me I’ve already done too much. And so I did the whole service seated, sitting through the songs and liturgy, an island of difference amongst a sea of standing. I felt a shame that I couldn’t pinpoint, to be defeated by my own body.

It’s a physical example of how chronic illness changes your perspective. Life looks different from down here, confined to the chair or lying on the sofa. As I thought about it these are the words that came to mind:

The world keeps spinning outside your door. Let is spin. Yours is to observe, to bear witness to the passing of the hours, the ticking of the clock. To notice how the light changes outside your window, the clouds forming and dissipating, the noises the cat makes as she sleeps.

There can be peace here in the letting go of control, accepting that you can’t affect which waves hit your shoreline. Remembering that the storms will make the pebbles round, smooth and beautiful. They are shining testaments to the fruits of waiting and patience. They will remain even as the tides change and the currents twist their complicated dance.

When all the noise goes away and your world inside these four walls stills, feel the air filling your lungs. Listen to the soft rhythm of your breath, as it joins the complex symphony of life. No two moments are the same. The future forever out of grasp, the past lengthening with every second. You only have the present and that is not always a gift. But it’s yours, yours to inhabit, to find hope within, to look for light and beauty.

And we can find God here in the stillness. He’s always been there with us but maybe the noise and the busyness made it hard to hear Him. When our assortment of plates kept spinning perfectly we didn’t need to trust Him. When we were in control of our own lives and strength was in our bones we didn’t need to lean on Him. He’s there when the tears fall, when there are no words for how we feel and the sorrow and disappointment weighs heavy on our hearts. As we cry out like children seeking refuge in arms that are bigger than our own.

It’s only when the plates we’ve been spinning fall to the ground and smash that we realise we weren’t supposed to pin all our hopes to them, reaching out to them with ever desperate fingers. We are loved for who we are not what we do. Our worth woven into our DNA rather than sewn into the clothes we wear, the things we own, the busyness and productivity. Sometimes we have to stop to remind ourselves that the world does not revolve around us, we are not the centre of the universe. Our planet orbits one that is greater, the sun that shines majestically bright. A picture of God at the centre of creation. Our shifting perspectives of Him don’t change who He is or the fierceness of His love for us. Far above all that we can imagine yet He cares about the intricacies of our hearts.

I will rejoin the world outside my door someday soon. But for now I will try to embrace this season of rest, let it fuel my soul as well as my body. To find peace within the stillness.

ME is a Real Illness

I’m in a bad flare of my ME at the moment which might make this less cohesive with more typos than usual, it’s been written over several sessions with a considerable amount of brain fog. ME (Myalgic Encephalomyelitis) is defined differently by different organisations which is a symptom of its fraught history and neglect by the medical community. ‘Action for m.e’ define it as ‘a chronic, fluctuating, neurological condition that causes symptoms affecting many body systems, more commonly the nervous and immune systems.’

I first had ME as a child between the ages of 6 and 10, whether I recovered at that point or simple moved from being moderately to mildly affected I couldn’t say. But I was re-diagnosed back in 2016 when I started my first proper full time job and my body couldn’t handle it. ME affects different people in different ways, for me it causes constant fatigue, ‘brain fog’ where I struggle to concentrate, muscle aches and viral symptoms. ME is often referred to a ‘Chronic Fatigue Syndrome’ or ‘CFS’ which is contentious in the ME community as many feel the name belittles the severity and breadth of symptoms. Personally that’s the name I use most frequently as I feel like it is much easier for people to understand and indicates the headline symptom without having to explain it to everyone each time. But when we talk about chronic fatigue we’re not talking about the kind of tiredness you get at the end of a day. It’s the kind of all consuming exhaustion you get if you’ve not slept for several days or are getting over a bad bout of flu. It’s a complete lack of energy a weariness that seeps into your bones.

I am lucky that my ME is usually on the mild end of the spectrum, which means I am able to work part time and have some form of social life. Many people aren’t so lucky and can be severely affected, ending up bed-bound or significantly disabled as a result. I have learnt to live and work with it but it still affects and limits me every single day. It is exhausting and unrelenting, whilst sleep and rest can prevent a worsening of symptoms they aren’t restorative. It’s like you’re trying to fill a bucket that has holes in it, no matter how hard you try you can never fill it up. I can’t remember what it felt like to wake up with energy in the morning.

ME is chronically misunderstood and under-researched. The only significant research study, called the PACE trial, has been discredited and brought into disrepute due to the recovery outcome measures being changed part way through the trial. This meant a person could be determined as improved even if they had stayed the same or deteriorated. Despite ME affecting around 17 million people world wide (source: action for me) we still understand little about what causes the illness and how to treat it.

The medical community at best has been slow to recognise the significance and severity of ME and at worst has actively disbelieved patients and disregarded the condition. It’s common for this physiological illness to be treated as a psychiatric condition with doctors telling you ‘it’s all in your head’ or blaming it on stress or depression. It’s frequently treated with CBT which is a therapy developed for mental illness. Rather than admit that there’s a lot about our brains and bodies that we still don’t understand patients often get blamed for their illness or accused of fabricating it.

The widespread news and acceptance of ‘long covid’, a post-viral illness triggered by an infection of COVID-19 with symptoms still around six months after infection, should be a significant development for ME research. You see ME is often triggered by a virus of some description and many of the symptoms of ME mirror those of long covid. With doctors accepting the existence and severity of post viral syndromes like long covid, I, like many ME suffers, expected this understanding and acceptance to be applied to ME too. After all covid isn’t the only virus or even only coronavirus that infects people. Why should there be anything unique about covid 19 that triggers this chronic illness? Isn’t it reasonable to assume that other viruses can do the same?

Unfortunately I have yet to see evidence of any of the learning and understanding of long covid being applied to ME. They seem to be being treated like two entirely different classes of illness, rather than different triggers for the same illness. I live in a large city and a few years ago we finally got our own specialist multidisciplinary service for the treatment of ME/CFS, this meant people like me could access support and treatment without the exhausting trek to the service in the next city. This service was fantastic and was coincidentally where, due to the background of some of the professionals there, I managed to receive psychological and dietetic support for my eating disorder which was my primary issue at the time I was referred.

I was hoping to stay with the service and get support for my ME once the eating disorder was under control. However, when the time came I discovered that would not be possible due to the service having ‘lost the contract’ for CFS and now solely treats those with long-covid. In essence those of us with ME in my city have lost access to this specialist support service and are back to relying on the underfunded and overstretched service in the next city, now treating double the number of patients. It baffles me how the prevalence and recognition of long covid seems to have left the ME community in a worse position than before.

Why am I writing this today? Well currently my usually mild ME has flared up to a point where I’m signed off work feeling worse than I think I’ve ever seen it. My energy levels are at an all time low and it’s only in light of this that I am reminded just how much in life takes energy. It’s not just the obvious things that take energy like exercise, cleaning and working. It’s also the more basic things like taking a shower, cooking dinner, reading, sending an email and even watching TV. With so little energy to go round what do you pick? Is today the day you can do washing up or does that have to wait?

Every day is an elaborate balancing act. I can’t simply stop doing everything and lie in bed all day because then I would decondition my body to a point where building back up to working again could be nearly impossible. There’s also my mental health to consider as living alone without work I could easily not see anyone all week. So I have to make sure I go for a short walk each day, getting me out of the house but also keeping my body tolerating movement. I make sure I talk to someone each day whether on the phone or in person. I can walk the 5 minutes to my local coffee shop which gives me a break from sitting on my own sofa. I also try to be careful how much of the day I spend napping to avoid falling into what I call the ‘nap black hole’ where the more you sleep the more you need to sleep until your waking hours dwindle ever lower. All the same I feel guilty every time I see a friend or leave the house for a walk. If I had the flu I would stay in bed for a week and then I’d get better. Unfortunately ME doesn’t work that way and so requires a different approach, although I still worry people will judge me for it.

But do I know what I’m doing? No, not really. I’ve not had a flare like this before so I’m using educated guesses on how I should be handling it. I desperately want to be in work, I like my job and my colleagues. Working gives me purpose and structure I want to be back there soon. But the terrifying thing is I simply don’t know how long it’s going to take to get better. I have seen little progress day to day in the week I’ve been off. I’m hopeful that progress is happening just in such small steps that it will take a while to notice. The reality is I can try and do all the ‘right things’ but the speed of my recovery isn’t within my control. And I really want to feel in control.

So when I spoke to the GP on the phone and explained the situation and he asked whether he should put on my sick note that I’m ‘tired’ I nearly lost the plot. I wanted to say that this is a debilitating chronic illness not a hangover. If only it were that simple. But whilst that word doesn’t sum up what’s going on in my body it does reflect how I feel about how ME is handled. I am tired of ME being ignored and misunderstood by doctors. I’m tired of having a diagnosis that comes with neither a definitive cause or a treatment. I am tired of internalising that stigma until I doubt my own illness and stop listening to my body, ending up overdoing it and being in the position I’m in today. But more than anything I’m tired of not having the energy to enjoy life in all it’s fullness, of the daily complex energy equations of what I can and can’t do.

If I’m honest today I’m struggling to stay positive, my hope has taken a battering over these last two years and it too is fatigued. But my friend sent me a quote this week about hope that came from Twitter that spoke to me as I faced this:

“People speak of hope as if it is this delicate, ephemeral thing made of whispers and spider’s webs. It’s not. Hope has dirt on her face, blood on her knuckles, the grit of the cobblestones in her hair, and just spat out a tooth as she rises for another go.”

CrowsFault

That’s the kind of hope I can believe in today.