catch up : 17.05.2021 …

Fortnightly Catch Up 17.05.2021 …

Welcome to the latest edition catch-up.

Specifically talking about my previous fortnight, I couldn’t have been more shocked with our news (will explain more below in the what’s new section).

* Don’t forget whenever you see MiA … it means I have been unable to journal anything on that day due to serious illness or just because I was unable to do anything, except keep my head above water, on that particular day.

What’s New …

Last week we found out that my previously extremely strong and healthy husband has heart disease and needs an urgent bypass. We’ve been married since 1995 and except for a bout of food poisoning once and an allergy to cats / dogs he’s never ever sick. He’s never been off work sick (except the food poisoning). And now this …

We are both seriously blindsided and so my catchup will probably be filled with news about him. Him being in hospital and then coming home to convalesce for at least 12 weeks is going to be hard because he does everything for us both and without him I’m lost …

What’s Important …

Your health … if you have it, look after it and value it …

If you don’t have your health please love and nurture yourself and do whatever you can within your power to improve it …

Diary (03.05.2021-16.05.2021) …

Monday …

As you can see, from my notes above and if you read my previous fortnightly catch up, you will realise my husband is in hospital having a double heart bypass.

This news has blindsided us as he is normally such a healthy person.

I do expect that an awful lot of my catch up diary, for however long, will be around him, his heart operation, getting him home, and his recovery.

That said, my life at home is going to change dramatically. He generally does everything and now I’ve definitely got to pick up the slack of some of those things.

Somehow.

Some of the things I’m just going to have to leave. Food shopping I’ve already done my first online order and I will just continue that way. Everything will be easy ready meals. We have a robot hoover and so that will just carry on hoovering on the days that I can cope with the noise. Dusting will have to get left. I only ever wear pyjamas so that will stay as it is and I don’t iron them neither. But when Andrew gets home if he can’t take care of his own ironing I don’t know what’s going to happen (he too will have to change his ways of being and let go of being able to wear what he wants).

In the here and now, a real biggie is keeping in touch. Generally, I do go on social media in moderation and obviously I work on my website. As regards my website I have quite a few articles scheduled to automatically post and I may not be able to add to those and I may also have to take a break in between when the scheduled ones end and starting up again. I know you will understand.

But I am also finding that keeping in contact with him means that I am forever looking at my phone. Because of this, I’ve had an awful lot more headaches and pain and I feel totally wiped out. Yet, as any ME/CFS suffers reading this will know the adrenaline running round my body is keeping me going but causing issues too, which will most certainly become worse as times goes on.

Tuesday …

MiA …

I have woken up the most poorly and the sickest I have ever been with my ME.

I am breathless just lay in bed.

I did wake up with an awful 9/10 headache and just unbearable pain all over. But, thankfully the tablets have worked really well on the headache.

My upper back and overall body pains are still respectively in around 8/10 and 7/10 pain. In general this would really be too much for me to cope with. But today it’s the breathlessness, even lay in bed and I’m slightly breathless. I generally speak my writings into my iPad / iPhone, depending which I’m using, and it turns my words into text for me, but I can’t even do that today.

I have a call from my local ME clinic today and if I’m still like this when she rings I’m going to ask to speak to the doctor.

husband update : 12:00 it’s looking like he’s getting rid of the blood thinners really quickly and his operation is now scheduled for Thursday afternoon, not the seven days the consultant previously thought. That’s four days earlier than expected.

Wednesday …

MiA … I spent the whole day in bed …

It is my birthday today. I am 59 years of age. I was 22 when I first got sick and although it was mild in the beginning, it was mild in name only because I was quite severely ill and in hospital for nearly 2 months. Then after about a year the illness became mild. From that time until about five years ago I flitted between mild and moderate for many years. However, in the five years just gone I have become severe. And I now flit between severe and quite severe.

I’ve written a blog post about me, ME, my birthday and ‘a life unlived …’ …

I have also been sending photographs from the window to my husband daily and so I think I’ll share a few with yourselves.

My husband is having his operation tomorrow circa 12:00. I feel really anxious and emotional. I’m also very conflicted because of how many people are concerned about him. He’s been told he will recover to his former self and he will have his life back. Yet the kindness and offers of help he is receiving are astounding by comparison to what I get.

I am devastated that no one really cares about me and unless something changes drastically I won’t ever get my health or life back. How twisted is the perspective people have about this awfully devastating illness. I can’t stop crying and I don’t mean flowing tears I mean heartbreaking turmoil and soul pain.

I also feel so guilty for being so concerned about myself when my husband needs me to care about him. I feel like such a bad selfish person. But this illness has taken everything away from me and I am so quiet about how pained by it all I am, no one knows or even cares.

Thursday …

MiA …

I feel so anxious and sick …

My husband has gone for his operation today. During the timeframe of the operation I have a social services care assessment. I am entitled to help and the suggestion was for a personal assistant (PA), which means I’m not going to having to be messed with at set times in the day. However, a PA is means tested and so we will probably end up paying as we never seem to be entitled to anything. This country is a joke. I have to pay council tax, prescriptions etc and with what … I don’t earn and I’m not entitled to benefits. So it all falls on my husband. It’s a bloody joke but I won’t get started on that one.

My husband went for his surgery at 12:00 and I am ringing the hospital ward at 18:00 to find out it went etc.

16:30 – I have just had a phone call from the hospital. My husband is out of surgery and everything went well and everything looks well too. He is now going to the high dependency unit and he will be asleep for quite a while, maybe a day or two. But, I can ring the HDU at 6 o’clock for an update when they have had a chance to settled him in and they will able to give me a more up-to-date update… at 20:05 I got a phone call actually from my husband. He awake and doing pretty well by the sound of it.

Friday …

MiA …

I’m at the dentist again for my extractions to be checked. There is something wrong. It’s now 25 days since I had them out and I still have a huge hole in the bottom one and a smaller hole in the top one. Likewise with pain. The bottoms one really hurts especially into my jaw and ear. And the top one hurts, but much less.

I also have updates from my husband. I spoke to him last night and I also spoke to him this morning at 5 o’clock in the morning, and then again at 09:30.

It is now 12:15 and I have started to feel incredibly poorly. I have a food delivery coming between 12:00-13:00 hours. And I am meant to be at the dentist at 14:30. I feel that unwell that I think I am having a major crash and getting a really bad migraine.

I ended up having to ring the dentist to cancel. There was nobody there to take my call so I left a message informing them that I may need to still see the dentist as I am still having issues with both extractions and that I will ring them on Monday if this is the case. However, I am too unwell make it today.

The food delivery came at 12:25. I put everything away that had to be chilled. I took aspirin because I had all the cocodamol I could take at this time. And then I went to bed to sleep.

Saturday …

I had a phone call with my husband today. He sounds much better but feels exhausted. He is only two days out of major open heart surgery. That said, he is claiming he will be home Monday. We will see …

I have been very unwell myself, again.

Sunday …

My husband rang today saying he could come home today.

WTAF 😱

I am so not ready. The house is a mess. There’s no food in and it’s not arriving until Tuesday.

Plus, last night I had the worse night I’ve had in a long time.

My body kept forgetting to breathe. Sounds awful. Sounds scary. It is.

I have had it before, when I was caring for my children when they were small and I would get it when I was extremely tired. But, I’ve not had it for years. I actually forgot about until it descended upon me last night.

Anyway, he has just rang again, he’s not coming home tonight. Maybe tomorrow.

Monday …

MiA …

Tuesday …

MiA …

Wednesday …

MiA …

Thursday …

MiA …

Friday …

MiA …

This will have to be a very quick and brief update. My husband came home Monday night and was back in a different hospital by Wednesday.

He is back in hospital with infection and fluid on the lung. He’s been in for this time for a longer period of time than for the major open heart surgery.

I only made food (oven / microwave ready meals) for us for less that 24 hours and I’m floored. And so emergency care PA has been put in place for me and other arrangements will be available to us when my husband is discharged.

I will probably be out of action for sometime. But this, and future, fortnightly catchup will automatically post regardless, even if it’s empty of content.

Saturday …

MiA … I am struggling so much and it’s as if no one sees it or cares. Because the mr is in hospital and sick it’s as if I am expected to suddenly become well and keep up with everything that he used to do but is no longer able to do.

I believe this is closely linked with people’s attitudes to ME. It’s as if they are saying ‘ok you’ve had your fun, you’ve rested long enough. Time to shift yourself now’.

I am also being instructed to collect a case that’s too heavy for him. A case that when he asked for it, I said that’s too heavy, I can’t pick it up empty never mind with stuff in. And he isn’t meant to lift more than 1/2 a kettle in weight. This case, empty, weights more than two full kettles. Now, all of a sudden, it’s too heavy … can you come and get it …

D U H … nope sorry if you don’t need anything or you don’t need collecting then I cannot use my non existent energy to do that. The hospital is approx 50 miles away. I cried as I wrote my reply. But I have to protect myself. I have to let people know I am beyond my limits. I am entitled to a carer and care package, in the process of getting a PA and therefore, I am not well enough to be anybody’s carer because I need one myself.

Sunday …

MiA …

 fragmented.ME xXx