Pacing is neither cure not effective management. It’s hard to perfect and to justify.

Pacing is what you are told to do with most chronic illnesses that cause fatigue. Pace your activities so you feel as well as possible, your condition stabilises and hopefully start to get better. With ME this is basically all we have and it’s not enough. Most of us don’t really get any education by our medical professionals on how to pace and some get dangerous advice. Pacing is a word open to much ambiguity. When should I stop? How much should I do? When should I rest? Although on one hand that’s positive because rigid timings kill all joy and cause a lot of stress and anxiety it’s hard to know whether you are just “being lazy” as people often confuse ME/CFS with or “scared of activity” leading you to test your limits on a better day/week just to prove otherwise…

Because ME has the hallmark characteristic of Post Exertional Malaise or Post Exertional Neurological Exhaustion which tends to hit between 24-72 hours after an activity but can be longer if you are just running on adrenaline which happens to me all too often.

Yes there are warnings signs as such. For example me not being able to feel my legs properly and feeling like I’m going to collapse but that doesn’t necessarily mean I’ll get PEM from that activity.

Then the PEM hits, increased head pain, facial pressure, back of head pressure, dizziness, brain fog ect. Sometimes I recover fairly quickly. Other times it can take a month to start getting better.

If you start feeling better you think you can do something or should be making use of that time.

It’s hard to rest on a good day just to prevent consequences. If you’ve been ill for a while you want to go out seize the day, make up for that time lost being in bed, barely able to function.

And even if you think your doing this successfully the PEM can still come on. Either because you overestimated yourself or just because pacing isn’t a perfect science nor is it all in our control.

We could get a virus, it could be that time of the month, have a bad nights sleep because someone decides to start drilling at 8pm and doesn’t stop till midnight or symptoms could keep us awake. A stressful situation could arise.

And we go backwards even if we were pacing perfectly.

Sometimes I just say “Fuck it” to pacing.

Either because I want to live my life or I feel pressured because people with other chronic illnesses seem to just be able to push through unbelievable things and I’m just not trying enough.

Now this never ends well. Although I can push cognitive activity without getting too much worse if I’m laying down I can’t with physical activity.

When you want something so much it’s hard to not give it your all. It’s hard to remind yourself that ME is different to other chronic illnesses in that doing too much has often disastrous consequences.

Pacing is hard and impossible to do perfectly. I’ve had people tell me I need to pace better in order to work not understanding that my level of illness makes pacing and being in the office 5 days a week impossible.

Don’t tell us we should pace. We already know that.

And if we aren’t pacing I can reassure you that it’s because we really really really want something or need something or because we just want to spend time with loved ones.

On Ableism becoming a wheelchair user

I made the decision the other day to get a wheelchair. It’s a decision I really should have made years ago but I was too scared and I could walk okay when I needed to…. so it was fine right? I mean not really but it’s hard to come to the realisation that you need a aid that many people see is only for people who are paralysed or otherwise literally cannot walk when you can. Adrenaline will keep you on your feet it just really hurts, the pressure in your head gets exponentially worse and it cases payback which limits your ability to do other things. It’s also hard to justify needing a wheelchair when you can climb. I don’t know why because climbing and walking are two completely different types of movement and your able to sit on the mats and rest inbetween.

It’s scary anticipating neighbours simultaneously seeing you walk to the car to go to your nans or the climbing wall or wherever else one goes in the car, but go out in the chair to go to town or the doctors or wherever once I have built up the ability to self propel I may go on my own.

There’s definitely a lot of people my parents included who don’t understand how chronic illnesses fluctuate. If I pace myself okay I can function and with my ME feel okay. Not healthy person okay but ME/CFS okay. Like the day I’m writing this. There’s some inner energy but the symptoms are still there. With my EDS yes my joints would be better if I could get myself more conditioned by climbing more but even then some days they are worse than others. Some days I can’t go into the freezer without partially dislocating a shoulder, others I can.

There’s also a lot of people who think people in wheelchairs somehow also have an intellectual disability – like we can’t speak for themselves.

And the awful “wheelchair bound” no for me it would be some freedom outside of the house with less payback and I know others feel that way.

It’s difficult navigating spaces that aren’t really made for us but it’s better than being stuck in the house.

And that. That would be amazing!

Does anyone else use a wheelchair for certain outings? What ableism have you faced?

Fibromyaliga

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May 12th was fibromyalgia awareness day. May is also fibromyalgia awareness month so I thought I should write a lil something to raise awareness. Yes I have three chronic illnesses with the same awareness month.

Fibromyalgia is a widespread chronic pain condition which causes pain all over the body. This is generally nerve pain and is often sharp, electric shock like burning pain. I find mine can radiate around my body so much so that I am unsure what part hurts the worst. Or it will target a specific part of my body like my lower left leg and stay there, leaving me unable to walk normally.

Fibromyalgia often causes tender points and previously this was used as diagnosis. I don’t often get tender points, other than in my lower legs, not that I’ve noticed anyway and I’ve never had a full tenderpoint examination.  These tender points mean some sufferers find that they can’t bear their own clothes without causing more pain.  Although I don’t have tender points as such my sensitivity to pain has increased. I never used to feel blood tests or vaccinations and now “sharp scratch” feels like a lot more than a sharp scratch.

Fibromyalgia also causes morning stiffness and unlike ME/CFS which is a very similar illness can be managed through exercises. (Low impact exercise like swimming, Pilates, walking etc.) As I have both I find gentle movement and stretching can oftentimes help my pain, especially in the moment but there’s a danger of doing too much and then getting payback.

People with fibromyalgia often get migraines, suffer from IBS like symptoms, have numbness and pins and needles, fatigue, brain fog, TMJ, bladder issues, in females increased period pain. On that note there is a link between endometriosis and fibromyalgia, or atleast seems to be.

I know many women who have both and I myself am suspected to have both and a doctor has actually said to me before I got my fibro diagnosis that the increased widespread pain I was feeling was likely due to my body being in so much pain with gyne stuff for so long.

It causes insomnia, which for a fatigued population is really not fun. People without sleep issues probably think if we were lacking that much energy we could just sleep all day.

But fatigue and sleepiness are very different things and sometimes our symptoms are overwhelming that it is simply impossible to get to sleep.

It’s common for people to mistake it as a psychosomatic but although fibro can be triggered my emotional trauma it is not psychosomatic. We just don’t have a biomarker. It’s a diagnoses of exclusion although many people get fibro diagnoses and later find they actually had something else.

It’s also common for people to ignore the spectrum and think just because one person can do an active job we can all do active jobs or we can all work at all. This isn’t true. It’s so complex and varied, every person with fibro is different and some of us have access to effective pain control others of us don’t.

Ibuprofen and paracetamol may help some people but it does nothing for my symptoms. I take the maximum dose of gabapentin but also use heat ice, heat cream, freeze gel, spiky balls and self massages.

Pain management is a cocktail of things. It’s also very much trial and error. Managing the other symptoms can be even harder, with doctors often unable to provide useful treatments the cost often falls upon us to make often expensive lifestyle changes which will come to no surprise as often unaffordable, especially if relying on benefits.

Fibro has no rhyme or reason and is almost impossible to understand until you get it but I hope this has given you all some sort of insight.

My Mental Health is Suffering in Lockdown

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And we are in week I don’t even know of lockdown. But it’s fair to say the lack of meaningful human interaction is starting to take it’s toll. I’m an introvert but even us introverts will start to crack if left alone with our thoughts for too long. I’m lucky I have access to social media and people to talk to virtually but I’m definitely starting to feel more low than usual.

My sleep schedule is non existent

I’ve started having anorexic thoughts again. Sometimes some really intense ones that have been hard to not give into.

My brain fog is worse and my ability to concentrate also worse.

There are things other people can do, which would help like they’re daily outdoor exercise which I’m not yet really well enough to do. Daily. (Although getting there)

I feel this social experiment COVID-19 has played on us leads to two questions being asked.

Will we have the mental health services and resources to help everyone after this?

Is there going to be more awareness of the fact that poor mental health in people with chronic illness is oftentimes secondary as a result of the isolation it causes?

I really hope so!

 

 

 

Words from an ME flare

I’m in the midst of an ME flare, something I should have seen coming. Something I should have got a grip on the second I noticed it starting nearly a month ago now. Many thoughts have gone through my head. If only I took a sick day at the time it started. What if this is now my new baseline and even sitting up feels like running a marathon again. What if I lose my spirit, my soul and stop climbing. (Spoiler alert, I won’t. But what if I’m forced to). Climbing is my identity, my passion and my sanctuary. I can’t bare to lose it again.

That aside, living with ME is HARD. Especially in a flare up. When everything is so unknown and you are so unbelievably drained that you can’t even put up a false front anymore. When you feel all the guilt, all the worry that no one believes you and thinks your just trying to get out of life and the fear. It can be hard to not let it take over and mess with your mental health, which is really needed during these times.

It’s hard to go through your body being so drained that you just can’t anything. Living with an illness more commonly known as “chronic fatigue syndrome” when it’s more than just fatigue. It’s impossible for people to understand due to the fluctuations in and dare I say it, the name and lack of research into the illness. No one sees us at our worst and often people see us looking okay when the reality is we feel the opposite.

In these times, when you have 101 things to do and aren’t up to one of them it’s important to have grace and alongside that have faith that it will get better. You can only do so much and sometimes flare ups happen with no reason behind them and no fault of your own. They just happen.

I find my faith helps me. Cheesy as it sounds and I know it doesn’t help some people but god does have a plan. I may not be a practising Christian in the sense that alongside other commitments I do not have the spoons to go to church. Nethertheless, dealing with what life throws at me with grace and having that faith is a key to me coping with this and not getting eaten up by it.

It’s hard and it takes practice but it’s so so necessary to deal with this chronic illness life.

 

 

A week of prevailing and failing through pain and fatigue.

It’s time for another week in the life. This past week has been characterised by lots of pain, lots of fatigue, getting lost and climbing.

Monday was my first day on the difficult cases at work and it was so much more fun than work has been! I found it much easier to get through the day with a little more cognitive stimulation. I went for a climb in the evening and took it easy as my elbow was causing me pain at work and I didn’t want to do any further damage. I spent a lot of time chatting to people which is one of my favourite things about bouldering and did a lot of technique/route reading practice and flashed a purple (v3-4) for the first time ever! (Yes I flashed a V3-5 over xmas but different centre so I’m taking the glory again.) Although I love projecting I really want to get myself more consistent and that purple was an important step towards that.

Tuesday was a bad endo day and not great mental health day as I was a stressed out mess over the GP appointment I had the next day and pain wears you down. I got home and I just couldn’t and hilariously enough the pain just got drastically worse once I was home. Isn’t potentially having endo, potentially having PCOS, potentially having something else all together so much fun. Anyway. I went to bed early got 11 hours sleep and on we go to Wednesday.

I had a GP appointment and she actually took me seriously and listened. I had to find my way to the hospital after the appointment and got a little lost cause the cold and google maps drains your battery. But, I found my way and got the 3 viles of blood taken. I am also getting another ultrasound at some point. I think of the transvaginal variety. Absolutely not looking forward to that! Went into work for the afternoon and god were the cases bad. Or maybe I’m just a bad caseworker. I then climbed and not gonna lie my right bicep is still sore as we were doing endurance stuff and being me, I may have pushed it a little too far but it did feel really good to be in the training area, doing actual exercise like the old Han would be. I also resent a purple after the session which is mad! I’ve never resent a purple before. *Slight disclaimer here is yes in grades, yes 4 years ago, yes before I took 3 years out* It was another sign towards me slowly getting myself towards my goals.

Thursday was a horrific endo day. How I worked and smashed my stats I will never know. But anyway, I got home, applied for a law event and then accidently napped. Woke up, got ready for bed and then slept for another 10 hours.

I felt beyond dreadful on Friday. But I powered through the bad cases and got as many grants as I could. Didn’t hit stats but what can we do. Not much. I literally just crashed when I got home and ended up with that horrendous midcycle migraine. You know the one so painful that you can’t eat, can’t do anything, can’t tolerate any light but also can’t sleep. It was traumatic.

Nevertheless, I took myself on a trip to rock over on Saturday and although I didn’t explore the whole wall, I spent 4 hours there! My hands were a wreck! I really enjoyed the different setting and movement that I had to do even on “easy grades”. I also felt super fancy on duotex holds and flashed a super fun lil v4 and the first few moves of a v5!. I did however aggravate my elbow again and have somehow aggravated the left one as well. My pain was horrendous Saturday night so again late night but got 10 hours sleep and still feel like hell so trying to rest as much as I can.

When I say I’m tired…

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This is a difficult one to write but an important one in order to raise awareness for fatigue causing chronic and mental illnesses as your average muggle just does not understand what we mean when we say that we’re tired.

Let’s just start by getting our understanding of tiredness correct. Tiredness can be relived by sleep, rest or even a coffee. Tiredness may even be relieved by a cold shower in the morning or a nice morning run (or climb).

When I say I’m tired that’s not what I mean.

I mean I’m dizzy. My brain is just not doing anything for me, and I struggle to understand the simplest of things.

I mean that I’m getting an intense pressure in the back of my head and neck and that is making me dizzy. I am struggling to stay sitting up. Let alone using my brain and working or engaging in a conversation.

I mean I have a debilitating headache or I’m just getting sensory overload for no apparent reason so please shut the fuck up.

I mean that I am in so much pain that no amount of distraction is helping. I need to either go for a climb or just lay in bed with whatever heat/ice combination and some reruns of greys anatomy.

I’m not just tired I’m exhausted. My muscles feel week and heavy. I’m struggling to coordinate myself, I can’t feel my legs. I’m having random muscle twitches and seizure like shakes.

When I say I’m tired, I mean I’m so tired that even if I lie down I feel like I’m about to fall. I can’t tolerate using a pillow. I can be completely flat and still feel like I need to be laying down more.

I don’t just mean I’m tired.

I mean my body is done and it needs a break.

What do you mean when you say your tired?

Being true to yourself never goes out of style

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Living with a Chronic Illness is tough, being LGBT+ can also be tough. Having a job as a stopgap to hopefully bigger and better things – also tough. Life is tough.  And there are many situations you may encounter in life where you feel you need to not be yourself. Where you feel you should pretend to be someone your not or downright lie as to why you want to take x day off. (As the mother suggests and does often).

Maybe there’s a bit of Hufflepuff in me, but I value honesty and integrity. I don’t want to be living a lie and I want the freedom to post about events I’ve attended on social media without having to worry about who’s seen it.

I used to try and pretend to be someone I’m not, fit myself into that perfect mould that people told me to be. Attempting to conform with that on application forms, contemplating the mould in the decisions I made in life and when I was a lot younger, pretending to be someone I’m not to make and maintain friendships.

My advice is don’t. Also don’t lie. Chances are you’ll get found out eventually.

I’ve got a lot further when I’ve been honest. When I’ve shown my genuine passion and interests.

I’ve also got myself into very bad situations from not disclosing my disability and as a result having to push myself more than my body was capable of. This caused a decline I haven’t come back from in 2017 and over the summer it caused some psychological trauma from being on a carpark floor in front of colleagues for two hours and having to go to A&E. It also caused me to be unable to walk for two weeks and drop attacks that I am only just getting some control over.

Never had this made being true to myself ring so true.

I have also found that I am a lot happier when I am being true to myself. In whatever way that may mean. It also helps me to create a narrative I can use throughout my training contract applications and soon LPC applications (I’ve heard this helps).

So yes be true to yourself. In all parts of life. Now this doesn’t mean sharing everything and anything. There’s a lot I don’t share. I don’t share the details of my illness in anywhere near as much depth as I feel them, for example. It just means being honest, and not pretending to be someone your not.

 

 

Why I can’t stand it when people think we’re faking our symptoms.

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Chronic illness is a fight. That’s why.

Let me tell you a story. A story of my life right now.

Way back in May I was given a provisional offer for a job up the other end of the country. Meaning living independently and working full time something I’m not really well enough to do so I need all the adjustments I can get. In the lead up to this becoming official I filled out many a form. One of these was a health questionnaire in which I detailed the adjustments I need to be able to do the job and why. I then attended an appointment which recommended said adjustments. However I still get an email asking me what adjustments I need and get a response saying I must apply to access for work AND that I can’t have flexible working allowance until successfully completing a period of probation.

And maybe these things are reasonable, but hear me out.

It takes 3 weeks to hear back from access to work. I start in 4. Had you told me before I had accepted my offer and started looking for houses then fine I get that adjustments cost employers money and they need that money back in some way. Access to work is a way to do that. BUT we know how poorly governmental disability help treats ME/CFS and associated conditions and guess what I have. ME/CFS and associated conditions. I applied for a blue badge when I was so poorly that I could barely walk around my house without finding myself on the floor and got rejected because that wasn’t enough. I wold never get PIP because I seem to function seemingly well yet I can’t keep a clean and tidy space, I can’t stand in the shower, I don’t shower, wash or brush my hair anywhere near as much as I should. I have to sit down to cook and have to keep it really basic as I struggle to coordinate and because brain fog is a barrier.

So what if I get rejected from access to work. And in their defence I didn’t say as much as maybe I should of but I quite seriously will not be able to do the job if I don’t have assistive tech and my ability to get into work may be too difficult too often if I don’t have a taxi allowance. Especially considering I’ll also have to cook, maintain a clean space, maintain a clean body and ideally try make some friends up there.

As for flexible working what about when my endo pain is so bad I can’t get into work until 10am or I partially dislocate my hip 2 minutes before I have to leave in order to get into work on time. Or when my ME is too bad to  actually sit through work all day and produce quality work but I’m still able to work from home and will likely be more productive than if I was in the office. What about those periods where medical appointments are seemingly never ending because I need them. This is anticipated upon moving to a new part of the country. I can anticipate a fight to get gabapentin up there and as my main pain medication I wouldn’t be able to work at all without it. I wouldn’t be surprised if that requires an appointment for one. Not all GP surgery’s are open outside of 9-5 hours. All of these things could prevent me from passing probation but could be remedied by a flexible working allowance, yet I can’t have one until I’ve passed probation.

You see the issue! Why would I be faking something that is causing so much stress. Relocating is stressful for anyone. Relocating with a disability just amps up the stress because there’s so much else to consider. Do I need this extra stress no? So why on earth would I be faking?

I honestly think the more awareness raised for these illnesses the better. So a) people are less inclined to think faker but b) so these barriers are easier barriers to cross.

I hope someone can relate to this issue of the barriers upon barriers and extra stress. As always I’m grateful for being functional as I am but it certainly isn’t without challenge.

 

 

I quit my job because of my health and it’s not the end of the world

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Imagine this. Three weeks ago you were full of life. Doing better than ever. Yes you were still ill. You were still symptomatic but you were full of life – full of hopes, full of dreams, full of excitement and it was foreseeable that you could actually put all of those into action.

Imagine starting a temporary job that you ended up loving. The people, the places, the fact that it was out of an office, the chaotic and varied nature of it. And yes. I was symptomatic. Yes my joints were fucked. Yes I wore braces more often than not but I could do it. I could manage.

I was working over my contracted hours by choice and genuinely loving being able to do all the things.

And then life happens.

And life, as life often does hit me like a ton of bricks.

I had a little crash. Well I say little. Realistically it ended up not being that little. Presumably because it hit in the middle of a full day excursion so I had no choice but to deal. So what actually happened was that I ended up unable to move my legs for two hours which was fun. But anyway – despite feeling beyond dreadful the next day I thought I could push through and work as long as I took precautions and I did – nothing much else to say about that other than looking back I realise how stupid I was.

So fucking stupid. I’ve lived with ME for 5 years, I should have known better.

The next few days featured getting stuck in showers, chest pain, heart palpitations, difficulty breathing, shakiness, dizziness.

All the signs that would let the average person know they had to stop or at the very least slow down. But did I?

No.

Admittedly that’s because I could adrenaline myself up to work and so I felt okay. Not well, but okay. If I really felt that bad at the time,  I would have swapped shifts with someone, especially for excursions. But I didn’t. I never felt that bad at the time.

God do I wish my body didn’t have this magical running on adrenaline power. I also wish I hadn’t gone to Oxford. Everyone said I shouldn’t be going. Everyone who saw the state I was in the night before.

But what did this stubborn bitch do. She went. Because I woke up feeling better than I did the night before and my thinking clearly went no further than that.

And then shit happened. I’m gonna spare medical details because they’re too painful to talk about. But to summarise, I ended up in hospital, and felt no better – if not worse after a day to rest. My body literally gave up on me. And me knowing my body knew there was no way I was finishing the last 2 weeks of this contract. It wouldn’t have been safe for anyone and would have certainty jeopardised any chances of a quick recovery. (Recovery being defined as where I was three weeks ago.)

So I made the brave decision to leave. I’m saying brave because it was difficult and it would have been so much easier to stay. I need the income, the experience and I was happy. I also need to know I can. Which of course I can and if I can’t work full time then that’s just statistics really.

Most people with ME/CFS can’t work full time at all. Very few would be able to successfully activity lead at a summer school – and I doubt any without some degree of payback.

This doesn’t reflect on me as a person or anyone else who has had to do this. It also doesn’t mean those two weeks were wasted.

It’s just life. Yet another curveball, another setback.

Another hurdle. But what I have learnt, is that this is a hurdle I can jump. I will see the other side.