fragmented.ME …
catch up ...

catch up : 03.05.2021 …

Fortnightly Catch Up 03.05.2021 …

Welcome to the latest catch up instalment.

I know I don’t do that much but I have enjoyed doing these so far. They’ve helped me realise and accept a bit more just how poorly I am and just how cathartic writing is.

So without any further ado let’s get on with this!

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 …

At the start of this fortnight’s catch up I am really poorly and not recovering very well from my dental extractions. I ended up with dry socket and a small infection and so lots more extra pain to deal with.

After my assessment on 27.04.2021 I am hoping to at least get some real guidance on potential POTS and other related issues, and maybe even some better pain management.

My husband got taken in to hospital (read below for the details – Thursday of week two) …

What’s Important …

Every day is a new day to see your surroundings with different eyes. I took these photographs below, the morning of Friday 16.04.2021, two days after my dental extractions, when I was in severe all over body pain and simply trying to find peace in my surroundings. I wondered around our garden and took a few snapshots. These are some of them.

#FromMyGarden 16.04.2021 ...

Diary (19.04.2021-02.05.2021)

Monday …

MiA

I am very much missing from everything right now. Those who follow my catch ups will know on the Wednesday just gone I had two dental extractions and they triggered my TMJ or my trigeminal neuralgia or even both. I am in so much pain I can barely think. So, for the next few days until I feel much better than this I have decided to just post a picture taken from one of our windows.

#FromMyDoor 16.04.2021 ...

Tuesday …

MiA

I have to go back to the dentist. I have had so much pain. I am almost certain it’s TMJ or trigeminal neuralgia triggered by the dental treatment. But, my husband says I smell funny and I can also taste a funny taste too, so we have to return to be sure.

Except, for my initial experience with TMJ and / or TN I’ve never had such extreme facial pain. It’s excruciating and I feel so unable to cope with it, despite my prior experiences with this and also having daily pain. This pain is on another level …

I’ve been to the dentist. I have got dry socket and a little bit of infection. So the dentist cleaned it out and packed it with this medicated fill. It looked like a dead fly and tastes like disinfectant. Not that I’ve ever tasted disinfectant but from the smell we all have an idea what it might taste like.

Anyway, it’s just disgusting and I feel rather poorly. I’m off to rest now!

#InMyGarden 16.04.2021 ...

 Wednesday …

MiA

#InMyGarden 16.04.2021 ...

Thursday …

MiA

#InMyGarden 16.04.2021 ...

Friday …

MiA

#InMyGarden 16.04.2021 ...

Saturday …

MiA … I am sorry for my continued absence. I have been extremely unwell following these dental extractions. That said, I do feel a tad better today, but I am taking the active resting right through to Monday. See you soon x

#InMyGarden 16.04.2021 ...

Sunday …

MiA

#InMyGarden 16.04.2021 ...

Monday …

I am still not back to my previous levels of illness but today is the start of things. I’m having a much needed bath and hair wash and clean PJs in preparation for tomorrow. That’s it, that’s all I can manage. Well actually I can’t manage that much but I want to feel cleaner than I do.

My husband seems to have forgotten he was attending the assessment as well tomorrow. Typical. It happens all the time. But guess what? I’m not that bothered anyway. I’m more than happy to go this alone, I always have and always will. Well I don’t really get much of a choice do I?

I can recall so many doctors appointments and consultant appointments that I’ve told him about and he didn’t even bother to ask how they went. I know he’s busy working. But, he does have very deaf ears when it suits him. But me too … I can play that game as well.

It lets me know where I stand in the scheme of things. Actually where I have always stood. Likewise …

Well, F you, F you, F you, very very much … I know I might sound really catty but we’ve been married a very long time and I’ve never really had much emotional support or help with the kids. I guess he could say the same about me financially. So as a team we would probably work really well. But sometimes it does get to me. It has taken lockdown for him to realise just how poorly I actually am, but we can move on from this, we can move forward and I have to admit since seeing, and accepting, how poorly I am he has become a lot more physically supportive and tries very hard to be understanding of how I might be feeling.

Tuesday …

Today was my ‘assessment & formulation’ appointment 

Big sighing breathe out …

I want to be honest with you friends and I have woken with a major migraine.

WTF and why?

The only thing I can think of is food. Yesterday, I ate Indian (with the chunks of chicken picked out). I still can’t chew because my mouth is so painful so I’m sticking with soft foods. The husband had bought me a bacon pasta, with loads of chewy fatty and stringy bits of bacon in. No way could I eat that. The other option was pasta spinach. Still too chewy and stringy (we ate this meal tonight and it wasn’t actually chewy or stringy at all so I could have had that). Really, it’s that bad. The pain in unbearable and over two weeks on my mouth hasn’t healed any and is worse than the day I had the extractions. So the final meal he bought was Indian. At least I could pick out the whole pieces of chicken. But I know Indian food doesn’t like me. So why did I eat it. Why do I keep ignoring what I I know.

I woke at 04:00, got my ice hat, took a syndol and a cocodamol, and went back to sleep. Woke again at 06:00, got a new ice hat, and took three aspirin, and went back to a very disturbed sleep. I then woke again at 08:00 and came downstairs. I closed all the blinds and opened a patio door to keep the lounge dark and cool. It’s been very bright and warm in Cumbria of late and I need to feel cool and cosseted by the dark too. I also cannot do my meeting in a stuffy and bright room.

Please, please, if there’s a god up there, help me be well enough for this appointment at 13:00. Otherwise, it’s just a waste of money, which is another reason I wanted to go through the NHS. I can’t afford this and I can’t afford to be under financial pressure to be well for the day of each carefully booked appointment.

I had the appointment. It went very well and you can read about it using the ‘assessment & formulation’ link above.

Wednesday …

Bad headache. Feeling unwell. Dental extractions have flared up again and really don’t seem to be healing properly. So, I had to return to the dentist, who popped the infection, cleaned out the hole and put another ‘dead fly’ (medicated packing) in (this is in the upper extraction, the previous ‘dead fly’ went into the very back lower extraction). I have to now go back in a week for him to keep a check on them.

I’m back home now. Face throbbing. Feeling super sorry for myself.

By 18:00 I had developed a severe unusual headache and took three different kinds of pain medications and went to bed to have a painful and fitful sleep.

Thursday …

PLEASE NOTE: this diary entry and the following two, specifically the parts about new clothes were pre-planned prior to my husband getting sick. I don’t have the health or energy to remove them, even though I do feel they are far less appropriate now, considering my husbands illness. But because of my own ill health, I am going to have leave them in here. I only planned the clothing share over these few days to fill in my diary. I did, however, actually buy these all clothes last week.

new PJs ...

I got some new PJs in the M & S online sale …

These PJ, I’ve had before from the last season, and they are super comfy, cheap and often on offer. I got two pairs in each pattern. So, I now have nine pairs of PJs, that I can wear through the year. It will also allow me to change my PJs daily, if I am physically well enough, instead of every other day. I bought a size bigger this time as the reviews suggested they were on the small size and I really like my PJs baggy and loose.

Health wise, I woke with the same dreadful weird headache after a very disturbed and painful night. I think it’s a reaction to the clove oil in the medicated dressing. So, I stayed in bed all day.

My husband has had some health issues recently and he had to go to hospital today. He’s never ever been ill since I’ve known him. But since having the covid vaccine he’s just not been right. So I am at home worrying about him. Sat there worrying, I get a phone call from an unknown number and almost die thinking it was the hospital about my husband.

But relief, it was my specialist headache clinic ringing me. I had an appointment I’d forgotten about. It was a very long and convoluted appointment from someone new trying to feel their way with someone who is almost 59 years of age with severe ME and really doesn’t need the hassle.

Husband update: They’re keep my husband in hospital to do an angiogram and for that he needs to be moved to Carlisle (50 miles from us). And so I have to get a taxi to the not so local hospital (£40), take him some clothes and and bring the car home. I will also have to collect him from Carlisle. That is going to be hard.

After doing this I have really serious pain in my upper back and my head hurts more than ever. I have also sweated so much I have to have a bath. After my bath I go to bed and cry. I’m so poorly and my husband is the only carer I have.

Tonight I have become acutely aware of how much I need him, of how very alone I am.

Friday …

PLEASE NOTE: this diary entry and the previous one and the following one, specifically the parts about new clothes were pre-planned prior to my husband getting sick. I don’t have the health or energy to remove them, even though I do feel they are far less appropriate now, considering my husbands illness. But because of my own ill health, I am going to have leave them in here. I only planned the clothing share over these few days to fill in my diary. I did, however, actually buy these all clothes last week.

new sweatshirts ...

I got some new Lucy & Yak sweatshirts.

Gorgeous aren’t they?

Lucy & Yak are not cheap, but they are a small ethical UK brand that I like to buy from, when I can.

Because I really like their style and their ethics too.

Prior to getting severely poorly I bought their dungarees and their short dungarees. Then when I got a bit sicker and couldn’t iron my clothes any longer I bought their leggings, which are well made and comfy, but expensive for leggings. As well, every single t-shirt I own is a Lucy & Yak tee and now I have these three gorgeous sweatshirts to add to my Lucy & Yak collection.

I used to buy my sweatshirts from Joules but have swapped to Lucy & Yak because I want to support small businesses with ethical processes in place.

I love a sweatshirt / cardigan over my PJ in case I get cold or if I go in the garden, which is rare these days, or I even have to go in the car.

Health wise, I’m am so poorly I’ve no idea how I will get downstairs never mind drive to Carlisle for my husband. It’s 03:00 and I’m in so much pain I all I can do is cry gently and I do, I just let the tears flow.

Better out than in my husband would say …

Husband update: He’s still in hospital and hasn’t been moved overnight to Carlisle yet. They have no beds. We have no family or friends who can help. I am well aware today of how alone we are. How much I need my husband. How isolated I really am. I’m slightly relieved they didn’t move him overnight and I’m hoping that it’s not until tomorrow but by tomorrow his underwear / clothes I took him and our food at home has ran out and prior to last night it’s been over two years since I’ve driven and since I’ve been food shopping. When I feel a bit better I’m going to do an online food shop.

Husband update: this has to be the biggest shock ever. He had his angiogram today and they’ve said he may need stents but it could be much worse and he could need a bypass. They will move him to Carlisle as soon as possible so that they can do a different kind of angiogram that tells them more and will allow stents to be inserted there and then if needed. It is so shocking, I can hardly believe it, and I’m absolutely gutted. This is my husband the healthiest person I know. WTAF …

Saturday …

PLEASE NOTE: this diary entry and the previous two, specifically the parts about new clothes were pre-planned prior to my husband getting sick. I don’t have the health or energy to remove them, even though I do feel they are far less appropriate now, considering my husbands illness. But because of my own ill health, I am going to have leave them in here. I only planned the clothing share over these few days to fill in my diary. I did, however, actually buy these all clothes last week.

Miranda Hart ...

OK bear with … I seem to be on a spending spree.

Two new pairs of Miranda PJs and a Miranda ‘bear with’ face mask …

I am in love …

The pink PJs say ‘behold my allure’ and the blue PJs say ‘uniquely me’, they both have a matching eye mask and storage bag. I really am so in love …

Husband update: he was transferred to another hospital last night and had a different exploratory angiogram and he has a severe blockage, an almost flattened vein. It’s a 95% blockage and it cannot be treated via stents, he has to have a bypass. He will be transferred again to a heart specialist hospital and have the bypass. We don’t know when but he is not allowed home as he could have a fatal heart attack at any moment and so he will be treated as urgent.

Sunday …

MiA major migraine …

PLEASE NOTE: from here on none of the diary has been preplanned and so you will get it as it happened or possibly a day or two later.

At 23:15 the hospital, where my husband has been moved to in order to have the bypass, have had a very long chat with him. Although, they wanted to do the operation tomorrow, because of the medications the two previous hospitals have given him to thin his blood, just in case it was a clot, it means that he has to wait seven days before the operation can safely be done. Otherwise, there is a good chance he could bleed to death because they were blood thinner medications. He will also have to have a double bypass (a fairly new method will be used, which takes longer and more skill, but is safer and cuts healing time). So we are looking at him being back home in about another 12-15 days.

The month of May is also ME awareness month and I had a few things planned. Some of these are blog posts that have already been completed and scheduled so will automatically post on the website. However, others were not complete and I’m not quite sure if I will be able to finish them too.

I will have to play this by ear, day by day. As an ME patient this is what we are good at, letting things go, not getting upset about it, and playing life by ear, day by day, and often minute by minute.

That said, please do keep coming back and checking and also remember that I am fundraising for the ME Trust UK starting on 12th of May and for ten months in total too. As well, instead of reading a book a month, as I had previously planned, I may have to turn each one into listening to the audio version of that book. Everything will be clarified, just probably on a very ‘ here and now’ basis.

* just a reminder that I am fundraising for The ME Trust UK as part of ME awareness 2021. I am going to read 10 books in 10 months and document them on the ‘ten books in ten months …’  blog page.

Please click the link above to read more about this and to also donate and help me raise as much money as we can to The ME Trust UK.

 fragmented.ME xXx

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. 🥰