365 days with ME …
As part of ME awareness 2021 I am going to do a short point / sentence / paragraph every single day for a year to describe how I am experiencing ME …
I will change the post date every so often (maybe weekly) so that it will always be at the top of the ‘awareness’ category.
On my really sick days I may have to play a little bit of catch up or I may just have a missing in action (MIA …) like I do on my fortnightly catch up.
UPDATE: sadly, I have decided that I am simply too poorly and cannot continue to do this for a year and so I am ending after six months 😪 …
. . . 365 days with ME . . .
… october 2021 / september 2021 / august 2021 / july 2021 / june 2021 / may 2021 …
… click the month link above and you will be taken to day #1 of that month …
… you can then read upwards or you can look for the little black ⌃ to jump back to the top of the page …
October 2021 …
day #31 …
that’s it … no more daily facing how sick I am …
needless to say today has been one of the worse days in a while …
I couldn’t get up until 18:45 😓 …
day #30 …
Another bad bad day … there’s just nothing I can do now … I think I’ve reached the tipping point of no return …
day #29 …
NICE have published … read my post …
day #28 …
Still very unwell but the pain levels in my chest are half yesterday’s so I’m able to eat and engage with my husband … who has much to chat because all around us our locality is flooded … like I really care …
day #27 …
I am severely unwell today … severely …
I think I have costochondritis again … but I’ve never had it this bad before … had I had home visit access I would have asked for a GP to come …
my husband wanted to take me to A&E … but I felt too poorly …
I didn’t eat a single thing … just drank water all day … that’s is …
WTAF is this illness and the lack of care for me …
day #26 …
I have some kind of regular people illness on top of ME … I am sure of it … I feel so unwell it’s not true …
day #25 …
I wish I felt better than I do …
I wish I could do more …
I wish . wish . wish .
I so wish …
I wish … I wish … I wish …
all feel like empty wishes right now … I am so not getting any better but I do feel like I am definitely getting sicker …
day #24 …
Never ending PEM … from what … I’ve absolutely no idea …
BUT, it’s should destroying all the same … and I feel I’m screaming out into an empty echo chamber …
day #23 …
Life is so hard in so many ways right now …
I’m not coping with my health lot and I feel so unsupported and understood surrounding the impact this illness is having … it’s all too too much for me …
day #22 …
I came here today to update you regarding how unwell I still am from having a bath & hair wash and I realised I lost another day yesterday … my life is fading into lost days coupled with nothingness …
day #21 …
P E M . . .
day #20 …
I ate pretty much a very small amount of food today but it made me feel like I did three nights ago … that said, I did force myself to have a bath and wash my hair, it was so difficult but so necessary …
N E W S . . . NICE to publish new ME/CFS guidelines … post coming soon …
day #19 …
I cannot even speak … am I dying …
day #18 …
I cannot put into words how poorly I am …
day #17 …
WoW I had an episode last night that was the scariest thing to happen so far with this dreaded illness. I couldn’t even make it up the stairs. I actually had to crawl up, and crawl very fast too otherwise I might have passed out.
I am not fully recovered but feel far less closer to death than I did last night …
I will try to document this once I am well enough …
day #16 …
M I G R A I N E S T I L L . . .
day #15 …
M I G R A I N E . . .
day #14 …
I’ve been lost in the illness again … sorry …
day #13 …
…
day #12 …
Today is our 26th wedding anniversary …
I’d say this is a massive achievement on both sides considering what we’ve been through …
day #11 …
…
day #10 …
…
day #09 …
MiA …
day #08 …
MiA … migraine …
day #07 …
MiA … migraine …
day #06 …
I just realised I got a little confused with my days. Yesterday and the day before were actually put in as the 1st & 2nd of October … WoW … that’s how poorly I am … I have no idea what day it is …
Today I had a bath and wash my hair for the first time in three weeks.
day #05 …
Today I managed to spend some time on my website playing catch-up and ending all the regular posts that I cannot keep up with. It’s all been too much for me …
day #04 …
M I G R A I N E (day in bed) …
day #03 …
p e a c e …
day #02 …
Because this is my last month of my 365 days with ME … (read above for the reasons why I’ve cut it short), I am aiming to update it daily.
Well today is exceptional. I woke with a very mild, more normal kind of headache, if that’s a thing, a normal headache. So, I didn’t take any pain medications on waking.
This is so unusual that it’s unsettling. It has been well over five years or more since I didn’t wake with pain levels that needed medicating.
Be grateful … I hear you say …
I am … BUT the last time this happened the following day I had the worse migraine ever. So part of me wonders if I should take half my pain meds anyway, just in case I get a withdrawal migraine … if that’s a thing …
UPDATE: 10:15 taking my pain medications as the pain levels are building beyond my coping abilities …
day #01 …
Hello and I’m kind of back. Still very very sick but with a new focus. Stick with me and I’ll do my best to be around more and be more balanced in my approaches …
October 2021 …
September 2021 …
day #30 …
MiA …
day #29 …
MiA …
day #28 …
MiA …
day #27 …
MiA …
day #26 …
MiA …
day #25 …
MiA …
day #24 …
MiA …
day #23 …
MiA …
day #22 …
MiA …
day #21 …
MiA …
day #20 …
MiA …
day #19 …
MiA …
day #18 …
MiA …
day #17 …
MiA …
day #16 …
MiA …
day #15 …
MiA …
day #14 …
MiA …
day #13 …
You will no doubted have notice my clear MiA … I have been seriously unwell and unable to update in any shape or form. Hopefully, today will be the tide of change …
day #12 …
MiA …
day #11 …
MiA …
day #10 …
MiA …
day #09 …
MiA …
day #08 …
MiA …
day #07 …
MiA …
M I G R A I N E A G A I N . . .
day #06 …
MiA …
M I G R A I N E A G A I N . . .
day #05 …
I am not going to lie … I am having the worse time ever right now …
day #04 …
MiA …
day #03 …
MiA …
day #02 …
MiA …
day #01 …
MiA …
September 2021 …
August 2021 …
day #31 …
MiA …
…
day #30 …
MiA …
…
day #29 …
I finally made a start on packing up and clearing put the garage. It’s so sad letting go of your stuff, especially when it’s for things you loved to do. It’s a reminder of what you’ve lost.
Today, it was clearing and boxing, for the auctions, all my fabrics, which I used for making voile panels and lace curtains and other.
It only filled three medium boxes, but it was enough physical effort to floor me.
day #28 …
MiA …
day #27 …
feel like I really need a break …
day #26 …
Bad day again 😓 …
day #25 …
I’ve had a few days of real hard struggle … today though I’m having a bath and a hair wash … regardless it will make me feel better I’m sure …
day #24 …
MiA …
day #23 …
MiA …
day #22 …
Still very poorly but think I might be recovering. I’ve taken vitamin B9 (folate) for four days now, maybe soon it will work …
day #21 …
M I G R A I N E A G A I N . . .
day #20 …
M I G RA I N E A G A I N . . .
day #19 …
M I G R A I N E A G A I N . . .
This really is NO life!
day #18 …
M I G R A I N E A G A I N . . .
day #17 …
Had a bath and washed my hair … it was so hard …
day #16 …
M I G R A I N E A G A I N …
day #15 …
Still poorly. But very determined too.
day #14 …
M I G R A I N E A G A I N …
day #13 …
ooooooops …
I failed …
I did my morning start as I always do …
oh well, it’s ok …
tomorrow is a new day …
day #12 …
YFC appointment …
Today I am having my session with YF_J at the YFC. You can read more about it in this specific ‘my healing journey …’ blog post. However, please note that I am not doing too good still and so writing it up / updating it may be a little longer than usual. Come back soon if it is t available to read.
day #11 …
Apart from to say that I am still feeling really poorly and I’m struggling massively I don’t know what else to write here.
day #10 …
Feeling utterly terrible … again …
day #09 …
WoW no migraine, just a bad headache. I spent the morning updating and catching on the blog.
Let’s hope this doesn’t push me into another migraine tomorrow. I really need a break.
day #08 …
today we remember all those
who have died from ME
and those who are alive but no longer living
and we ask that you speak up
for those too ill to speak for themselves
🤍💙🤍
day #07 …
MiA …
day #06 …
MiA …
day #05 …
MiA …
day #04 …
MiA …
day #03 …
MiA …
I had to cancel / rearrange my YFC_J at the YFC …
day #02 …
MiA …
feeling extremely worn out physically and emotionally with the level of illness I’m dealing with right now.
day #01 …
MiA …
August 2021 …
July 2021 …
day #31 …
M I G R A I N E A G A I N . . .
I am just too poorly right now …
day #30 …
1/2 M I G R A I NE (if there’s such a thing, if not it’s a …) . . .
M I L D M I G R A I N E . . .
day #29 …
this is all too much to bear …
day #28 …
M I G R A I N E A G A I N . . .
day #27 …
M I G R A I N E A G A I N . . .
day #26 …
M I G R A I N E A G A I N . . .
day #25 …
M I G R A I N E A G A I N . . .
day #24 …
M I G R A I N E A G A I N . . .
day #23 …
I woke up today feeling quite poorly but extremely determined.
So I did my stretches for my frozen shoulder, I did some other stretches for an app I have a free programme with and then I had a bath. That was it … day completely over …
day #22 …
I am overwhelmingly sad …
day #21 …
Still struggling.
poor sleep … lots of pain … feeling exhausted …
pits a really dreary life when you have to base your day around how poorly, exhausted, and in pain you feel … so I’m awake early but I don’t know how I will get through my day …
day #20 …
I am really struggling. I’ve been extra unwell and extra low.
Yesterday I had full allowance of cocodamol and full allowance of aspirin. I sweated so much all day and night and so today I made a deal with myself to have a bath.
My Ōura ring thinks I’ve been exercising. So does my body … I cannot tell you how fed up I am of all of this …
day #19 …
If you’re in a dark place today, that’s okay. Even if you can’t get out of bed, and all you can do is breathe, take all the time you need, and we’ll be here when you’re ready. Every day is a battle. Some days you’ll demolish everything in your path. Others, you’ll hold on for dear life. Either way, you’re a warrior. Never forget that. — unknown …
day #18 …
It’s another hot day in the UK and my hubby will spend the day outside and I will be stuck in feel sad alone. How many days can I carry on like this.
The loneliest moment in someone’s life is when they are watching their whole world fall apart, and all they can do is stare blankly. — F. Scott Fitzgerald
day #17 …
I am having some very difficult days … I am so sad and I’m not sure why I stick around or what there is for me to be of value in …
so close to giving up …
day #16 …
I slept solid last night according to my Ōura ring and my FitBit, however both say poor deep sleep for the longest of days in a row.
today I feel so,exhausted, lethargic, and in pain …
day #15 …
I am still very poorly right now … and to help you understand the extent of this is that I am normally very ill, but right now I feel seriously ill …
day #14 …
I woke at 04.04 with a full on migraine …
in bed all day …
day #13 …
I lay still, very still, and flat and just breathed …
it was all I could do today …
day #12 …
today I woke to the news headlines:
Long Covid: early findings brings hope for diagnostic test …
I wish I could be happy …
I really do …
But I feel beyond devastated …
I first got sick aged 24 and I’m now 59 and I’m housebound and often bedbound. I’ve been told to learn to live with my new means, called a liar, dismissed, discharged, abandoned and treated appallingly by the medical profession in those years and still we have no diagnostic test or treatment. Yes, long covid is similar to ME and so maybe, just maybe, their success will benefit us, but nothing can make up for the abandonment and loss I feel right now. Shame on you all for leaving us suffering so much and for so long.
#WhyCanYouNotSeeME …
day #11 …
this really is no life … I am merely existing … not living …
oh how I yearn to live again …
day #10 …
inhale the calm …
exhale the cares and concerns …
day #09 …
Since my appointment with the YFC on Wednesday I have been trying to have regular self check ins and to notice tension and release it. It’s early days yet but I hope to be able to see a difference in my sleep quality by actively relaxing while I’m awake.
day #08 …
another migraine …
day #07 …
I have a YFC appointment today and feel dreadful but I’m looking forward to getting down to the nitty gritty. You can read more about this, and my other YFC appointments, in ‘my healing journey …’.
day #06 …
bad day at black rock …
day #05 …
I am so poorly and so sad today …
I had a really bad night last night and I’ve woken up extra poorly and very low and so the struggle is even more difficult than normal. As well, to top it off my husband is back in Blackpool seeing / helping his aunt and his dad (it’s the fourth time in under two weeks).
Because I feel so unwell I’m also feeling rather catty and I wonder where the help for me is … I get one meal a day, not even a drink, and we almost had a huge row the other night because he asked me what kind of plate I wanted and I told him and then for some reason he decided he wanted to use, whatever he decided I was having, and when I said no they’re too heavy please us blah blah he almost let rip, mumbling and being passive aggressive … as if I was being awkward … no you asked, and so I said, and then you decided to change it to what you wanted … and when I said no you really couldn’t cope … so bloody controlling …
I am really fed up of living like this …
I cannot write anymore today because I’m simply not in my normal frame of mind … I don’t feel kind … and I really do not feel forgiving and able to excuse arrogant selfish passive aggressive people …
day #04 …
The bath and hair wash made me so poorly I now understand why I’ve been putting it off …
m e g a u n w e l l . . .
day #03 …
Today I had a bath (last bath about five days ago) and I washed my hair (last hair wash I am sure it was over two weeks ago) and now I’m too poorly to do anything … even eating my lunch has made me extra poorly …
day #02 …
Another extra poorly day. But, we did go out early and have McDonald’s for breakfast, which floored me. The going out early, even in my PJs, and the eating too much too soon was too much for my body that’s not feeling well at all of late. I always feel like I have, or am I am on the edge of, a migraine these days.
day #01 …
… another day another migraine …
July 2021 …
June 2021 …
day #30 …
I feel so much better today.
No I’m not well … but I do feel loads better than yesterday.
I have been looking for a hobby. Something that I can do that doesn’t drain me but occupies my mind. I have found some free lessons using a digital art program called procreate. No, I can’t draw but I will give it my best shot. I will post some of the digital images here in my ‘365 days with ME …’, and some in my ‘fortnight the catch up …’ posts, and others I may even use within my website generally.
* Please note, that wherever you see these images they are copyright and they are not for free use, unless stated otherwise.
day #29 …
I feel so sad today … the tears will not stop flowing …
w h y …
I woke with another migraine and then when I could finally face the day I read an article about ME and when I was trying to explain it to my husband I mentioned that all I wanted to do was wear my clothes and shoes and the tears just started and they won’t stop …
anyone who ever says that we like being ill and just don’t do things because of blah blah blah …
they do not have a clue …
today I feel heartbroken by the fact that I cannot get dressed everyday and wear beautiful dresses and shoes and handbags …
I am so sad …
day #28 …
I feel wounded and hurt today and instead of covering over those feeling I have decided to feel them …
It could get very messy.
My husband is very opposed to emotions and feelings and does not like to hear or see them.
it could get real messy.
day #27 …
another day in bed …
day #26 …
Today my husband is going to visit his elderly father and aunt (97 & 96 respectively). I cannot go, again, because I am too poorly and it will make me even worse.
So I am home alone …
what will I do …
I will try and catch up on my blog, I have an essay to write and I will aim to have a bath and wash my hair …
…
day #25 …
I am not feeling great … I’m trying to just keep my head about water …
I need a bath and hair wash but I really cannot do it …
day #24 …
Having an awful time right now. I’m not sleeping and I’m having major migraine days …
day #23 …
You’ll find me in bed again. Yesterday boy_1 bought me an Apple Watch, which I am over the moon with. However, I may have spent a bit too long trying to figure it out and today I have the worse migraine ever.
Also, it is also boy_2 birthday today. He works long hours and so I won’t see him but I am too sick anyway.
day #22 …
day #21 …
Living is a sickness to which sleep provides relief every sixteen hours. It’s a palliative. The remedy is death. — Nicolas Chamfort
day #20 …
#severeME #InBedAgain …
I really do not know how much longer I can do this …
day after day …
month after month …
year after year …
day #19 …
#severeME #InBedAgain …
day #18 …
Another bloody migraine. How many more days can I go on like this …
If you’re in a dark place today, that’s okay. Even if you can’t get out of bed, and all you can do is breathe, take all the time you need, and we’ll be here when you’re ready. Every day is a battle. Some days you’ll demolish everything in your path. Others, you’ll hold on for dear life. Either way, you’re a warrior. Never forget that. — unknown
day #17 …
Today I feel much better than yesterday but still utterly appallingly poorly. So I’m having another complete day in bed.
a day, or two, or even a month, in bed proper resting is much better for me than pushing and pretending while making myself sicker by the second — fragmented.ME
day #16 …
This is simply too much for any one person …
People fear death even more than pain. It’s strange that they fear death. Life hurts a lot more than death. At the point of death, the pain is over. Yeah, I guess it is a friend. – Jim Morrison
day #15 …
Pain is so disabling …
Few things a doctor does are more important than relieving pain … pain is soul destroying. No patient should have to endure intense pain unnecessarily. The quality of mercy is essential to the practice of medicine; here, of all places, it should not be strained. ― Marcia Angell
day #14 …
I am really struggling right now and so I will share my quote that I live by …
I’m gonna get out of bed every morning … breathe in and out all day long. Then after a while, I won’t have to remind myself to get out of bed every morning and breathe in and out. And then after a while, I won’t have to think about how I had it great and perfect for a while. — Sam (sleepless in Seattle)
day #13 …
Even sicker than yesterday …
It’s just a constant battle: me against my body; my passions and my dreams and what I want to do with my life, against what I’m physically able to do. — Austin Carlile
day #12 …
Mega unwell today … so so fed up …
In my experience, (ME/CFS) is one of the most disabling diseases that I care for, far exceeding HIV disease except for the terminal stages. — Dr. Daniel Peterson
day #11 …
Today I had a bath and that is it, that’s all I can do. Plus, I used a body cream that has made me feel quite poorly. I’ve used it before and been ok and it is all natural too. But today my head and my body says nooooooo …
day #10 …
The living honour the dead, only a breath divides them. — Paul de Monchaux …
day #09 …
Yesterday after I used the acupressure mat in the morning I felt incredibly peaceful and overwhelmingly tired, so I decided to use it again before bed and I had insomnia all night long. I’ve barely slept and so I feel particularly rubbish today. I am going to spend the day resting, and sleeping whenever I can, in bed.
day #08 …
Feeling very poorly. All night last night I’ve sweated yet my body feels icy to the touch.
listen to your body when it whispers and you won’t have to hear it scream …
day #07 …
Monday … if I am going to start or change anything it’s going to be on a Monday. And so today I am starting a new push towards self care.
I will start to daily:
-
- Use the Beurer Stress ReleaZer
- Go into our yoga / meditation room and do 5 – 15 minutes upper body stretching (for my upper back and arm issues)
- Use the acupressure mat programme (starting at 2 minutes gradually progressing to as long as I can manage)
- Be mindful in everything
Today I managed to do the stress releaZer … and the acupressure mat …, but only managed to find the Yoga with Adriene for upper back pain … YouTube session, that I used to do, and that was hard enough, so will start that bit tomorrow.
day #06 …
Today I feel it is important for me to take care of some of my needs, those I push down deep in order to feel part of the solution, and not just the problem, and for me to be more accepted or liked.
I am so fed up of the constraints this illness puts on me.
My ‘to dos’ for today are, come round easily and gently, and the before I go downstairs I will have a bath and wash my hair. I will then take the rest of the day from that point on. If I’m really impacted by the bath then I will put my PJs on and lay on the settee, if I am still coping I will get dressed and maybe do the garden or some food shopping, both are very high up on the needs to be done list.
PJs and lay flat out on the settee it was …
day #05 …
Can I share with you today just one horrific thing about this illness that I really need you to know …
I go to bed most nights feeling far better than when I wake up. Every single day I wake up feeling like I have been hit by a bus, all after a night out drinking, dancing and over eating. And sometimes I feel as though that bus has kept running over me until I am almost dead and then tried to finish me off by running over me one last time and has stayed right on top of me in the hope of completing the job. Leaving me in such a state that I can barely breathe and I am unable to move a muscle. But, unfortunately for me, I didn’t die.
Most days I get my head around this because the minute I open my eyes I take my pain medications, which by the way don’t always work, but do offer me hope; as I lay still and breathe through the pain hoping to fall asleep again or in hope that the breathe will bring a level of peace that will allow my tablets to work quickly. However, some days I wake before I can safely take them because I took the full allocation the previous day and so I have to deal with the horrific onslaught without any kind of hope or assistance, except time moving fast or ice packs if I can actually get downstairs to get them.
As you can well imagine waking like this every single day is beyond hard, especially so on those days when the medications don’t work or I have to wait several hours before I can take them. It’s at these times, I almost always wish that I was dead and if, when I feel that way, someone offered me a way out by means of a lethal injection or some other way out, I would probably take it. It is only when I have either got my head around the pain, or slept through the worse, or medicated it away, do I then feel pleased, or maybe I should say relived, that I am still alive.
This is such an appalling way to start each day and so undignified too. Can some clever doctor or researcher with plenty of brains and some empathy please find me something to stop my days starting this way … please …
day #04 …
The migraine is still there but I do feel a tad better today so I am guessing I’m on the right side of things …
day #03 …
Migraine still …
Depression affects almost 80% of migraine sufferers at one time or another. People with migraine, especially chronic migraine, also are more likely to experience intense anxiety and to have suicidal tendencies. If we want to live happy and joyful lives with migraine, it is vital that we acknowledge and deal with the emotional realities of the disease.
… Sarah Hackley …
day #02 …
Migraine again …
If you’re in a dark place today, that’s okay. Even if you can’t get out of bed, and all you can do is breathe, take all the time you need, and we’ll be here when you’re ready. Every day is a battle. Some days you’ll demolish everything in your path. Others, you’ll hold on for dear life. Either way, you’re a warrior. Never forget that.
… unknown …
day #01 …
A new month and hopefully a new attitude for me. Today is my appointment with YFC_J and I need to feel better than I do. I can’t remember the last time I had a bath and washed my hair and I really do smell. And so I made myself a rule when I woke up I wasn’t allowed my morning pain medications or my morning latte until I had a bath and washed my hair. So I am now clean but rather unwell.
UPDATE: My aim is to put something here in this diary every single day from now on, for the complete year, even if it is a simple one line quote to express how I’m feeling, or a single word to describe how I was feeling on the day. If I am unwell they will be added retrospectively but hopefully I won’t miss a day out from here on.
Today I feel very unwell and on the edge of another migraine.
June 2021 …
May 2021 …
day #31 …
I have my YFC appointment tomorrow and I was meant to be have a long over due bath. But I was too poorly again.
day #30 …
The garden needed doing. We have a large garden, just under an acre (it might be just under half an acre, I will need to clarify this because I’ve gone and forgotten). The garden is easy, with no flower borders, just five circles if meadow flowers. We also have an electric ride on mower, which does make the garden relatively easy. But that is only for a well person, or even a moderately affected ME person. Up u til four years ago I always did the garden. However, since getting severe it’s not easy for me to do. But, while my carer, my husband, is out of action it is unfairly falling on me to manage. And so today I did the lawn and PEM came on while I was still doing it not after I finished. This has made me so poorly. The PEM is becoming accumulative and I am getting sicker all the time.
day #29 …
I don’t know how long i can go on. I am crashing big time …
day #28 …
MiA …
I am struggling so much. The more I do for my husband the more I am getting very sick and yesterday I overheard someone say to my husband
don’t worry about her running around after you, you’ve ran around after her for so many times …
This has devastated me on so many levels. Firstly, I have never let him run around after me, never ever. I am too sick to go into the evidence of this but I am beyond heartbroken by it. Secondly, I am so much sicker than he is and no one sees or believes … this is so wrong and on so many levels too.
day #27 …
MiA …
day #26 …
MiA …
today I received news that I have been awarded a care package consisting of a PA, not sure on the hours yet but the most important fact is I don’t have to pay …
how could I really be expected to pay …
without any income …
but you just don’t know with this system …
I still pay council tax and for my prescriptions and dental treatment … yep even though I have no income I still pay … more correctly I should say my husband pays … he pays for everything … my food, my clothes, my medical expenses, and my Yorkshire Fatigue Clinic appointments too …
it’s bloody ridiculous because without him I’m snookered …
and you’ll know from previous diary entries, right now he’s out of action himself after having an emergency double heart bypass, followed by serious internal bleeding and infection …
day #25 …
MiA …
day #24 …
MiA full on major migraine … with so many appointments to get my husband to …
day #23 …
MiA …
I am loosing so much of my life …
Why would you take personal care of yourself and then expect someone who isn’t well enough to take care of themselves to then have to cook for you … really …
day #22 …
MiA …
I am loosing days …
day #21 …
It’s all getting too much for me. Yesterday, as nice as it was my husband having totally disregard for how poorly I am right now, offered my driving services to a neighbour who needed to collect her car from the menders. I probably wouldn’t have said no, had she asked herself, but how totally uncaring, disrespectful and disregarding that is towards me and my condition.
I really cannot get my head around what it really means and what it is telling me ….
Today, I’m the sickest I’ve been in a very long time.
day #20 …
Having lost my carer and in some respects being expected to do things that in reality I cannot do is the worse place ever.
Today, we had two visitors. Maybe I should more correctly say, my husband had two visitors, which I had to make drinks for and listen too. Anyone with severe ME will know you can’t even make yourself a drink never mind other people. And here I am pretending I can do this because I don’t want to be embarrassed, or end up rowing over it. But, I am seriously going down hill extremely fast and each day we wake up my husband is a little better and I am a lot worse.
It’s so f**kig ironic …
I do not feel loved, understood or cared for right now. And I definitely do not feel believed … otherwise no one would expect anything …
I am scared to death regarding what this period is going to do to me, of how I am more than likely going to be left even more severe and without any kindness or understanding like my husband has received …
day #19 …
MiA …
day #18 …
MiA …
day #17 …
I am determined not to make this blog about my husband and his health issue but I’m finding that more and more it’s taking over. And so from today on my diary entries and subsequent blog posts will be written from the perspective of my lost carer and how that’s has impacted me.
There will be no more updates about where my husband is on his recovery, just how I am impacted.
I am loosing sight of myself, again, as I always do. Putting others above me and forgetting how sick I actually am. I cannot afford to do this because I am already ignored as regards my sickness and judged as on an easy ride.
And so because of this and how I am feeling it, meaning judgement and expectation, directed so strongly towards me …
I have to be my own advocate …
because, sadly, no one else is advocating for me …
day #16 …
MiA …
Today I am so severe I feel like I might be dying …
day #15 …
MiA …
day #14 …
MiA …
day #13 …
MiA …
day #12 …
MiA … my husband is back in hospital and I can at least be poorly without feeling guilty about what I can / can’t do, I now have to worry instead …
day #11 …
MiA …
day #10 …
MiA … my husband came home and I am unable to be the carer … we are so alone …
day #09 …
My husband rang this morning claiming he was coming home today. I’m not ready. And I’m definitely not ready to take care of all the worry about someone who’s had major open heart surgery less than a week ago. I’m not a nurse and I have no idea if or when something is wrong.
12:00 – he has just rang again he’s not coming home today.
P H E W . . .
Maybe tomorrow.
Today I did some washing, well the washing machine did the washing but I still have to put it in there and hang it all up and for someone with severe ME this is virtually impossible. It was real hard and I lay down and cried once I’d completed it.
Last night I had a really awful night. My body kept forgetting to breathe. Even while I was awake it was happening. But I was just so exhausted and I kept falling asleep and then waking up gasping for breath. I have had this before, a very long time ago. I think it happens when I’m extra super tired, because it used to happen when my children were small and I was pushing myself all the time because I had no one to help me.
I wanted to just rest all day today and try to get over the awfulness and the effects of last night. But, I think in between resting I am going to have to do little bits of preparation stuff. And by the end of the day I will have achieved something. Not that a healthy normal person would even be able to realise I had done anything by comparison to what they achieved. But, I will have made progress and I will have done things in preparation for my husband coming home tomorrow.
This is too much for me … I seriously need help.
day #08 …
Yesterday was an incredibly difficult day. It is bad enough being poorly every day, but being poorly and having your carer, and somebody you love and are seriously intertwined with, in intensive care and not being able to make contact with them is extremely hard.
And when you have ME sleep, there is not restorative sleep that would normally fix you and make you better in order for you to be able to pick up where you left off, it just doesn’t work like that with ME.
Today, I am severe.
I don’t have a migraine but I am more physically exhausted, more physically tired, and more physically in need of someone to look after me.
And so, because it all feels like a real struggle, I will just turn over and go back to sleep.
The struggle is so real.
But I feel I have responsibilities. I need to find out how my husband is doing because he has not been in touch with me since yesterday morning and I need to know how he’s doing and where he is at. Whenever we speak he claims he’s doing great, recovering well. Yet I don’t feel it when he doesn’t keep in touch. I’m not sure he’s doing as well as he would want me to believe.
day #07 …
MiA … migraine .
A little breakdown as to what you missed and what I missed yesterday. (As I reread this a week later I’m thinking this is day 08, but I’ve been that poorly I’ve confused myself.)
I spoke to Andrew in the morning at 5 o’clock, he rang me. He’s doing good. Obviously he’s had major open heart surgery and so good is all relative. But, by comparison to the general path of recovery my husband is on the good side.
I had a pre-booked appointment to keep a check on my extractions yesterday. I was working towards that as my goal of the day, then around midday the headache I had, I always have, began to turn into a migraine and I got dizzy, extremely nauseous, and just had to lay down. All my internal muscles were shaking and it felt like my life was fading from me.
These sort of symptoms and feelings are a real signal that I’ve been doing too much and that I am not going to be able to push past this, I will just continue to get sicker. So I rang the dentist and cancelled. I stayed awake until my food delivery came, which was around 12:45 and then I got into bed and stayed there until around 20:30 in the evening.
TBC …
day #06 …
What a day … my husband has had his open heart surgery . Everything went very well.
But it has been an incredibly difficult day.
I did have the second part of my social services care assessment, which lasted a long time and the assessor kept apologising profusely. But, it was a lifesaver because it was during the time of my husband’s operation and so it interfered with me being seriously worrying all the time. And then within 15 minutes of the call ending the hospital rang to say he was out of surgery and been taken down to CICU.
At 20:09 he rang me. Yes, this is really unusual within four hours, in fact, within less than four hours of having open heart surgery he was on the phone to me. What a man …
day #05 …
Today is my birthday. I am 59 years of age. I spent the day in bed, with all the blinds closed, full allowance of pain medications.
It’s looking like my husband will have a double heart bypass operation tomorrow afternoon.
day #04 …
MiA … too poorly to post today …
day #03 …
MiA … too poorly to post today …
day #02 …
Oh boy am I poorly today. Major headache, aching all over, finger and feet hurt so much. My husband is being transferred from Carlisle to another hospital to have bypass surgery tomorrow. This is still such a shock I’m struggling to get my head around it. But I can’t think or type much today. My older son has been there via telephone as support and a couple of my husbands friends have offered help, which is really nice.
day #01 …
First day of 365 days with ME and we are off to a very real start. I woke with a major migraine and had stay in bed until I felt well enough to move. My husband, my main carer is in hospital with a very sudden and unsuspected heart issue. He usually does everything. So I made an online food delivery and did nothing more until my tea time at 18:00 (oven ready meal). I ate my tea, watched an hour of TV and had to go back to bed. I am feeling really sad about this but this really is the reality of living with ME; overdo things, even just by too much thinking or feeling, and you pay a price with your health.
May 2021 …
… 365 days with ME …
… 💙🤍💙 …
Please feel free to contact me to share your outcomes or with any questions you may have.
fragmented.ME xXx
fragmented_ME
My birth name is Denise, but I’m know as Bella to those who love me. I have a first class honours degree in education & psychology and a strong passion to keep learning and educating others ... I have severe ME/CFS and lots of other chronic illnesses and I started this blog as an expansion to my instagram page, where I advocate for chronic illness. I am married and have two grown up boys, or should I say young men. I have three gorgeous grandchildren, one boy and two girls. And despite being chronically sick and housebound I am mostly happy. 🥰
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