Our House Has A Quirk

Our house has a weird acoustic quirk.

So our house is a typical UK/Northern Irish three bedroom end terrace. Our ‘front’ door is actually in the side of the house, on the unattached gable end. When you open the door you are in a squarish vestibule with the staircase to your right, a door in front of you and a door to your left.

Walking through the door in front of you brings you to the kitchen. Walking through the door to your left brings you to our house long ‘front room’. Or lounge. Or living/dining room. Or whatever you want to call it.

Taking the stairs takes you to the bathroom on the right and Adam’s room on the left. The other bedroom on the left is Simon and mines and then across the hall is my office/studio.

Got it? Good.

So, the quirk:

If you are sitting anywhere in the front room and the front room and the kitchen doors are open, you can hear absolutely anything said in the kitchen.

If, however, you are in the kitchen, you can maybe hear a few words, if they are shouted, from the front room.

It really doesn’t make sense as the door to the front room is past the door to the kitchen, so somehow the sound can turn that corner into the front room but can’t turn it back into the kitchen.

Is sound like water? Does it follow the path of least resistance? And so things said in the front room goes up the stairs?

Yes, Mother, You Can Still Read This

You need to add a widget, row, or prebuilt layout before you’ll see anything here. 🙂

So a few weeks ago my son told me he didn’t want to speak to his Grandmother any more. As you may or may not know, my mother lost her mind a few years ago and said and did some awful things to my little family of three. We cut her off completely at that point.

We let her back in with very low contact after she sent me a sincere apology letter. Well, it was sincere but she still laid part of the blame on me because I hadn’t told her something. What I hadn’t told her was none of her business, which she still doesn’t get, and insists that if I’d just told her she never would have done what she did.

So a few weeks ago she and my step father and Adam and I had a live chat on FaceTime*. My mother lamented that she hadn’t spoken to us in months (since Adam’s birthday in June) and why couldn’t we speak more! I didn’t answer her and ended the chat a bit later.

I then said to Adam that I know he wanted to talk to them more, but it took so much out of me to be civil that I didn’t know if I could. He then asked why we talked to them at all then? And I said for him. My mother may have been and continue to be a crap mother, but she was always a fantastic grandmother. The kind of grandmother I wished I had had but never did.

We dropped the conversation then. But the next day Adam said to me that he didn’t want to talk to Grandma any more. I asked him if it was for me? Because that’s not how this works, he doesn’t protect me, I protect him. His reply? “Why would I want to talk to someone who treats their children that way?”

No flies on my boy! So I sent the email telling her that I was cutting her off. For good this time. And I did.

Except that I can’t find the part of this blog where she subscribed to it! It’s like somewhere in the last 15 odd years WordPress has removed it!

So my mother is reading this. She can even comment, if she wants.

But she doesn’t need to. Because I know exactly what she did when read that email.

She blow air upward from her mouth, slumped into her chair and said “She’s finally turned Adam against me. Always so much drama with her!”

Or words to that effect.

But it wasn’t me, Shelley, who turned Adam against you. That was, and is and always has been all on you.

And it’s still none of your business.

*Arthur C Clarke foresaw the end of long distance charges in 2001. He wasn’t too far off.

I Do Not Have Depression!

I have melancholia!

I don’t have anxiety!

I have hysteria!!

Man, back in the early 20th Century they knew how to name things!!

In any case, I have passed through my recent depression and anxiety storm. Not easily, of course, as they never give up without a fight, do they?

I wound up being off work for five weeks. During that time I spoke to many GPs and saw a psychiatrist (I can never spell the word correctly the first time. It’s a total block in my spelling centres.) I had a very long, over an hour, consultation with the psychiatrist, which is miraculous. You’re usually lucky to get 20 minutes!

Anyway, she listened to my entire history and to all the things that have been happening in the last 2 – 3 years. Things like the estrangement from my mother, my step mother’s death, COVID (bloody hell COVID), getting COVID, being diagnosed with sarcoidosis, and my dad dying. Her exact words were “That’s a lot!” And she was right.

She was also really happy about the meds I was on. GPs had already told me that they couldn’t increase any of my meds, as if they did it could cause something called a serotonin syndrome. It’s a condition that is caused by too much serotonin in your system. Too much of that usually very useful chemical: –

“causes signs and symptoms that can range from mild (shivering and diarrhea) to severe (muscle rigidity, fever and seizures). Severe serotonin syndrome can cause death if not treated.”

(Mayo Clinic Online, https://www.mayoclinic.org/diseases-conditions/serotonin-syndrome/symptoms-causes/syc-20354758, retrieved 12th October 2023)

So not a good thing. Maybe I shouldn’t have it tattooed on my back with dopamine? 😀

A woman’s back with a tattoo of two serotonin and two dopamine molecules in a row.
The first molecule is serotonin, then there is dopamine and repeat.

Anyway, increasing my meds, any of my meds, was not an option. As I said, the psychiatrist was really happy with the meds and the doses I was on. Her conclusion? Nothing to do but get through it. 

Sounds like kind of crappy advice from a doctor who specialises in this sort of thing, yeah? Except it was actually what I needed to hear. I wasn’t instantly no longer depressed or anxious, but at least I knew I was doing everything I could to get through it. Or was I?

See, the other thing that lovely psychiatrist said was that I had never really worked through my sarcoidosis diagnosis. (‘Scuse the rhyme.) She could tell, and she was right, that I am the kind of person who doesn’t just say ‘oh okay, I have that’ but that I am the kind of person who says ‘Huh, what is that?” And starts investigating, and I hadn’t done that with the sarcoidosis. I have no idea why but she was right. I never had.

Now, currently, my sarcoidosis is very mild. Even when I flare it is nothing more than a slightly harder cough and exhaustion, which, of course, could be fibromyalgia (which is another word I can never spell). And day to day is nothing more than an almost constant throat clearing cough. Not even constant, actually. Occasional. So I dismissed it as no big deal.

Except it is a big deal. It’s a life changing,  possibly life limiting condition that I will have for the rest of my life. On top of my Fibromyalgia, Arthritis and Type 2 Diabetes. I used to have a trifecta. Now I have a quartet!

So I start looking more into sarcoidosis and started to feel mentally better. I started acting mentally better, which my husband noticed almost immediately. I started knitting more, spending time in my home office *finally* tidying it up, (it’s horrible, it really is, FEMA will fly over any day and declare it a disaster area) and went back to the GP for *something* to let me sleep. 

Because that was also a big issue. Bad sleep. As in can’t fall asleep before 12, awake at least once a night (getting older is hell) to pee, not falling back to sleep after that for at least an hour and then up at 7, at least during the school year.

All of the sleep aids I’d been given, which included Ambien among others, made it impossible for me to function the next day. I was offered melatonin but the one time I took it I woke up with a very bad headache. The GP gently suggested that might have been something else and that I should try it again. So I have been,

And it’s been working. At least to some extent. I definitely fall asleep faster. I usually wake up at least once a night for the toilet (see above, aging) but I do fall back to sleep almost instantly. I’ve even woken up a couple of times just before the alarm went off!

So I’m back to work this week and have actually been in my office three of the four days I worked. I worked from home one day, which is totally okay with my boss and my company. I got lots done in the office and I came home from work nearly every day not totally exhausted! Wednesday I had to even tell myself to stop because I felt like I was raring to go and knew that I would pay for that later. 

I also realised, as I started to feel better, that I’d been feeling rotten for more than a few months. Probably from before I caught COVID, which I consider the point of Everything Going To Hell. Why I, or even Simon, never realised it is beyond me.

So, here’s today’s Tee’s Tip of The Day:

If you can’t seem to do what you used to do? Figure out why that is. And don’t assume it’s just because of all of your current conditions. Could be a new one! Could be a worsening one! Try to find out, mmm’kay?

And learn how to spell psychiatrist and fibromyalgia without using autocorrect!

This Time It’s Been Over a Year!

And it hasn’t been a good year. Well, a good 6 – 8 months, really.

Back in November, I got COVID. And then I got a cough that wouldn’t go away. Then I got a chest x-ray. Then I got a CT Scan. Then I got a referral to the Regional Respiratory Clinic. Then I got an Endoscopy. Then I got a diagnosis: sarcoidosis. Sarcoidosis is an autoimmune condition that usually affects the lungs and lymph nodes. For the record, when your GP says “There’s something in your lymph nodes that doesn’t look all that sinister” it’s still not very comforting!

For the most part, my sarcoidosis leaves me alone. But then Things Happen that make it flare. Recently that has included an emergency root canal, an emergency root canal part 2. Root canal part 3 didn’t make it flare. Who knows why?

In March of this year, my dad died. You might recall that he had dementia. I’m not sure I ever wrote about my stepmother dying, but she did, in August 2021. Totally unexpectedly. She was actually found dead on the sofa when no one opened the door and the police did a welfare check. She was Dad’s carer, so my sister and brother had to find him a place to live, which they did.

In any case, he’s been living in that place for just about 18 months, chugging along, not really changing. Eating his hot dogs and watching his game shows.

And then, on 10th March, my brother and I got a text from our sister; Dad is refusing to eat. She was going to go over to the living place the next day (a Saturday) to discuss hospice. Then we got another text. Dad needed oxygen overnight. I’m going over right now. Then, a few hours later, they don’t think he’ll last the night. And he didn’t.

And his death hit me hard. Harder than I thought it would. I thought I had done my grieving after the first time he had no idea who I was on Skype. I apparently hadn’t.

Going on from there I realised my mental health was deteriorating. For the first time in over 20 years, I was fighting depression and major anxiety. I asked to increase one of my meds and was told no. So now I’ve been referred to psychiatry and I’ve been off work for the past two weeks and will continue to be off for the next two. I have my psych appointment this Wednesday. Which is a miracle.

And that brings me to today. My Dad’s 86th Birthday. First one without him being somewhere in the world, even if I hadn’t seen him or spoken to him for years.

Happy Birthday, Dad.

Dad

17th September 1937 – 10th March 2023

PS That emoji up there, which is ‘disguise’ looks *exactly* like my dad.

Robyn in her dress

18 Years Ago Today

Simon and I were married.

We celebrated with dinner out last night and today, in the sure sign of a long marriage, we went to the launderette because our washing machine is broken! The repair people are waiting for a part so it won’t be fixed for another week or so.

To quote a friend: in sickness and in health, in good machine and bad. 🙂

18 years is a long time. And the 21 years we’ve nearly been together is even longer, obviously. So much happens in 21 years:

  • Moved to Belfast
  • Got married
  • Got a job
  • Got diagnosed with Type 2 diabetes
  • Had a baby
  • Started a company
  • Got diagnosed with fibro
  • Moved to a house
  • Bought a house
  • Started a new job
  • Survived a pandemic (so far) (no, it’s not over)

There were other things, of course, but those are the highlights.

And it’s had its ups and down, highs and lows. I’ve been dealing with my chronic pain, we both had to get through some lean years, and Simon has also had some health issues.

But, at the end of the day, what gets us through? Each other. Knowing that when we reach out to the other, they’ll be there.

I spend a lot of time on Reddit and other sites, reading other people’s requests for help. Sometimes I reply, I sometimes I just mutter to myself. But an overwhelming theme, it seems, on these posts, is people who are coupled but don’t have each other’s back.

So my one piece of advice for a long and happy relationship, whether spouses or partners or whatever you call your state of coupledom? Be there for each other. Take care of each other when needed. Fight if you have to, but make up well.

And couple up with your best friend.

Why do I stay up so late, you ask?

Okay, you probably didn’t ask, but I’ll tell you anyway.

Staying up late started during the pandemic, when we were all locked down. I was literally losing my mind because my family was in the house with me all the fucking time. I used to go to my office, which was empty except for me, just to have some time to myself.

And that didn’t always work because landlord would be around and I’d have to be polite. I hate being polite when I want to be alone.

So I started staying up late on Friday nights, as Saturday has been my lie in day since before the world ended. Saturday mornings our groceries are delivered, something that has been happening since long before the pandemic.

And Simon is the one who puts them away. He just always has been. And these days Adam helps. So Saturdays I have always been able to sleep in.

Then, Simon stopped being able to sleep in at all. He is, without fail, up between 0400 and 0600 seven days a week. Totally sucks for him but works great for me as now I could sleep in on Sundays too!

Lest you think me a horrible person who deprives her husband of sleep, he knows that he can wake me at any time if he needs me. And he has if he’s been up since 0400 and Adam’s been particularly needy (Note: this doesn’t really happen any more, since Adam is a teenager and does lots of things for himself!) he would wake me up to take over.

And he gets to wake me at noon on Saturday and Sunday so he can have a nap. He naps like a champ. Me? I’m up half the night and sleep all morning. I almost never actually sleep when I go to lie down after work or whenever.

So, I stay up late.

Really late. It’s 0211 while I’m writing this on my iPad. I’m just beginning to feel tired.

And, in case your wondering, I do still take pills to help me sleep. And keep me asleep. And on week nights (except Thursdays now that I don’t work on Fridays) I take them around 2200ish. And I’m usually still up until at least midnight.

I have spoken to my doctor about this and he’s reluctant to change my MAD MEDS (TM) since they mostly continue to work. I do have sleeping pills I can take if I really can’t sleep, but I don’t take them very often.

So what do I do while I’m awake? I watch my shows, e.g. Criminal Minds. I’ve lost count of how many times I’ve watched that from beginning to end. But it’s at least 10. It’s my ‘I’m too tired/overwhelmed/in pain/etc. to watch something new or something that needs my attention’. So I watch Criminal Minds.

I watch other shows sometimes too. Newer shows. I’m currently working my way through Moon Knight. But I find that takes a lot of brain and paying attention power, so I’m watching it slowly.

I also really like the Chicago Shows. Med, Fire and PD. We are finally getting them at once so I can actually watch the crossovers in the right order and everything!

Oh and NCIS. Love me some NCIS. Oh and 911. Both of those! Oh and SWAT!

And while I watch things, I do other things. I crochet or knit, I play games on my iPad or iPhone, and tonight? Tonight I’m writing this blog post.

So what games do I play? Puzzles and merge games almost exclusively. Crosswords, Picross, jigsaws, Scrabble with various friends, things like that.

The featured image on this post is a jigsaw puzzle I just completed earlier tonight. I really liked this one because I swear I could feel the velvet as I digitally put the puzzle together.

A truly great thing about Apple’s Family Plan is that it includes Apple Arcade and Apple Arcade keeps getting games I’m already playing, but I can play them 100% for free! Like the puzzle app where I did the puzzle above.

It’s called Jigsaw Puzzle+ and you can get it in the regular App Store but then you have to pay for extra puzzles. Now that it’s in Apple Arcade, I can play any of the puzzles and there’s thousands in the App. If you like jigsaws, I highly recommend it. (No, that’s not a paid commercial, It’s just my opinion on the app!)

And I also have six merge games that I play in turn. They are: Merge Manor, Merge Mayor, Love and Pies, Mergeficent, Travel Town and Cat Condo. Again, not a paid advert. I highly recommend all of those if you like Merge Games.

Adam said to me not too long ago ‘Oh I get it, you go to a new Merge Game when you run out of energy!’ And that it’s exactly! I find merging to be very satisfying and very low brain power and I love that!

So, I stay up late. And watch TV. And play mobile games.

And enjoy the silence of my house.

Angry Doesn’t Even Begin To Cover It

In case you’ve been under a rock, let me tell you that the Supreme Court of the United States decided to overturn Roe vs Wade. That’s the decision that made abortion legal in the US in the 70s.

So now, abortion is illegal. Or, well, what it is that is that it’s up to each state to decide. And if a state decides to make it illegal, it’s also up to them to decide how to prove an abortion took place and what the punishment will be. Texas began this bullshit with a law, that passed, making anyone getting or helping someone get an abortion be able to be sued for, at a minimum, $10,000. SB8 is evil. Texas is even more evil.

I don’t get how anyone I know can live there. But I know several people that do. If you’re reading this, tell me what makes Texas so great that you can live there.

And I am so angry. Not just at the Supreme Court for doing such a fucking stupid thing. But at all of the people who voted directly for Trump or voted for a third party candidate with ‘Anyone other than Hillary!’ as their rallying cry.

See, I don’t think they really meant that. I think they meant ‘I don’t want to vote for her because someone told me not to and there is no way Trump will get elected. She’ll win anyway.’

You stupid fuckers. This is all your fault.

You let a narcissistic, bullying, rapist lead the United States of America. You let that orange coloured waste of space appoint two Supreme Court Justices. You are 100% culpable in the January 6th Insurrection*. I blame each and everyone of you for what is happening to people in the US.

So don’t fucking do it again. This September, vote for the people who will actually save the US. I don’t care if you hate them. I don’t care if your religious or otherwise leader told you they are the devil themselves. If they are a Democrat? Vote for them.

You know what? I personally don’t like President Biden. I think he’s actions over the years towards women are problematic as hell. But the alternative, four more years of Trump? Would have been 10,000,000,000 time worse.

Better the devil who is not trying to take away basic freedoms from half of the population. Because that’s what making abortion illegal does. Takes away the ability to plan our own lives and our own health.

See, the thing is, pregnancy happens outside our control. People with uteruses are raped and molested. Birth Control fails or is sabotaged. Condoms can break. If pregnancy was within our control, we wouldn’t need IVF or ovulation kits or anything like that.

And sometimes foetuses develop badly. So badly that they can’t exist outside the uterus. That can sometimes lead to miscarriage but not always and medical help is needed to save the mother. What if a uterus having person has cancer and gets pregnant? Can you imagine what chemo might do to a foetus?

Ectopic pregnancy is when a fertilized egg implants in the fallopian tube rather than the uterus. If it is not removed surgically, in other words, through an abortion? The person will die. The fully grown, functioning member of society. Of course, the random bunch of cells that have incorrectly implanted will die as well. But that seems to be the only part the GOP and other conservative assholes care about.

People keep crying ‘But it’s against my religion! You must respect my religion!’ Guess what? Having abortion illegal is against my religion.

In Judaism, when a person with a uterus is pregnant, that foetus and that person are considered as one. The foetus is considered part of the pregnant person. And so if that pregnant person’s life is in danger due to having the foetus inside of them? The foetus goes. There are already challenges being raised in Florida by the Jewish Community. Making abortion illegal is against our religious beliefs and, therefore, against the constitution.

I have been wondering how those people who are happy about the end of Roe V Wade are going to feel when a person with a uterus that they love finds themselves pregnant through rape, molestation or even the failure of birth control. Oh wait, they’ll mostly be fine. Because in reality, this isn’t the end of abortion.

It’s the end of safe abortion for anyone who isn’t a rich, white, cis, het person.

*Of course, Justice Clarence Thomas’ wife Ginni Thomas actually helped plan the thing. I’ll leave that for another post.

Thanks to the ACLU of Georgia Facebook page for the Featured image.

Why I was Fired in Two Days

So I was suppose to start my job the second week of September. And I did. For two days.

On my second day, my mobile rang. I was home, as I work 10 – 2 five days a week. And it was around 330 when my phone rang with the name of my company on the display.

I admit, I panicked. Why were they calling so long after the end of my day and on my mobile? It’s my private mobile, so the only people who have it are HR, recruitment, my bosses etc. So I answered it.

It was the Head of HR. And a solicitor. It seemed that I was wrong about it being okay that my Indefinitely Leave To Remain (IDLR) visa was in an expired passport. Well, half wrong. It was fine to travel on it that way. It no longer gave me the right to work. It had to be moved to a Biometric Residency Permit (BRP) and until that happened? I was fired.

I had an email from my boss mere minutes after that phone call ended telling me she would keep my job open. She wanted me for it and no one else. So get it sorted and come back to work as soon as possible.

I, of course, spent a few minutes crying and kicking myself. I used to check the IDLR rules regularly! Why had I stopped? When had I stopped?

No clue.

Simon and I had a small amount of money set aside for something else but agreed using it for this was bettter. So I started to get organised to get my visa moved and looked into doing an ‘emergency’ application.

Remember how this was the second week in September? The first ‘emergency’ appointment available at any Home Office Visa office was 29th October. In fucking Liverpool.

I thought for sure that had to be an error. Surely there was some sort of problem with their online system!

So I rang.

Nope. No problem. That really was the first available appointment.

So Simon and I talked about it and I did some more research, which was telling me that people were getting their moved visas in just weeks. Not the six months the Home Office claims it can take.

So I got my stuff together and sent it in. That was around the 3rd week of September.

And I waited.

And then I panicked again. The rules about IDLRs had changed in 2012. I had been working for myself this whole time. Had I been breaking the law?!?!

So I found an immigration lawyer and gave them a ring.

I had not. In fact, by law, I didn’t actually have to wait to go back to work until the IDLR was moved. Having the IDLR, no matter what document it was in, gave me the legal right to work in the UK. But the lawyer wasn’t surprised my company didn’t want to take the chance, considering the fines start at £10,000.

So I kept waiting. And I got a text saying they had the information. And then another text saying it had been given to a case worker to review and I’d be contacted if they needed any other information.

What? Why did it need to be approved again?!?!

Because it was still in my name of origin. And to change it to my chosen name, I had to prove I had lived in the UK for the whole 15 years that I claimed.

Well, fuck.

So then I waited some more.

And then I got an email. Did I have any proof that I had lived in the UK from 2009 until 2017?

And I replied, um, I sent you all of the passports I have.

And she replied, no. You didn’t. There’s a gap.

And I hit my head on my desk and remembered that I had gotten a new US passport around the time Adam was born so our passport surnames would match. That’s a US government requirement, by the way. Not sure what they do about parents who have a different last name from their kids, as happens in this world, but for me it was easy fix nine years ago when we registered Adam’s birth with the US consulate and got his US passport and social security number.

So I replied again, I can overnight you my passport or can I just email you my tax returns for that time period?

And she replied that tax returns would be great and that I should have an answer in a few days.

And a few days later I did indeed have an answer. And my BRP arrived a few days later.

Biometric Residency Permit

Ta da!

And I went back to work 3rd December.

So all in all? Not paying the urgent price (plus flight and hotel) meant I only waited about a week past how long it would have taken had I paid and gone to Liverpool.

And my theory as to why there are no emergency appointments for weeks?

Brexit.

Which doesn’t even affect me personally in terms of immigration as I’m not an EU national. Of course it affects me personally in all the ways it will affect all of us in the UK. But not for immigration.

So I’m now legal again, until my BRP expires in five years. But I won’t be fired this time. There’s a grace period to get it sorted once you have one and need another one.

And I have a permanent reminder in my diary to check the IDLR rules every six months.

Just in case…

Drawing of me with fire in the background

The Menopause

So, as I think I’ve mentioned before, I turned 50 last week.

And like a switch being flipped my occasional bout of feeling slightly warm has turned into hot flashes so hot I swear I’m on fire. So far my sleeping meds have prevented these horrible things waking me up, but I am expecting to have that happen any day.

So I went to my GP’s office and chatted to one of my favourite GP’s, Dr Mc, about what I could do, since I can’t take hormones, as they give me migraines. And he actually suggested natural remedies. He admitted that he had no idea if they actually worked or if it was all placebo effect, but we agreed even if it’s just placebo effect, anything is better than feeling like you’re on fire!

So one night this week after work I am going to go to Harland and Barrett and see what they have for “Menopause Vitamins.”

I promise to report back.

Unless I spontaneously combust before then…

Why I Really Missed PIP by One Point.

As I mentioned previously, I applied for Personal Independant Payment in 2017 and took it all the way to appeal.

And I lost. By one point. I am one point not quite ill enough to receive the  money the government claims I’m entitled to. 

Except I’m not entitled to it. Not any more.

And everyone keeps telling met to reapply. That finding that one point, by starting from the beginning, shouldn’t be too hard.

But, for right now, the government has won. I don’t have the energy to start all over again.

And that’s what they are counting on, really. That they’ll wear down those of us who, according to them, are ‘fine’, so we’ll give up. Go back to work and not try again.

So I am, currently back at work, part time. 

And I’m exhausted and in pain. Like always.

But I’ve also been thinking about why I actually didn’t win my appeal. 

Because I don’t think it’s because I didn’t have enough evidence as to why I get anxious when I go some place new (the point I was trying very hard to get).

I think it’s actually because the appeal committee, who I met in person, saw the Robyn who covers her pain. And her exhaustion. 

Because that’s what a lot of us with invisible illnesses do. We cover. We put forth a facade of being normal. Of not hurting. Of being fine.

It’s not that we’re faking sick. We’re faking well.

And it can be hard to turn that off. To show how we really feel. 

How every step hurts. How our words get jumbled. How tired we actually are.

I am so used to letting no one, not even my family, see how bad I really feel, that it’s hard to drop the act and let it show. 

And why do I keep up the act? Because I have to. No matter how I feel, I have to get up and get Adam ready for school, and now me ready for work. I have to make lunches and help him with his uniform (Yes, even at his age. He’s still autistic, after all, and still has issues with fine motor control.) and wait for his bus with him.

Sure, Simon helps as much as he can. But he leaves the house over an hour before we do, to make it out to his campus for his first class. That might ease up a bit if Ulster ever actually moves to Belfast. (Perhaps a post for another day…)

So, as it always has, it falls on me. Except now, after Adam is on his bus, I’m on mine, off to work.

And I love my job. I really do. It’s the Administrative job I’ve always wanted in terms of autonomy, power, and the back up to use it. 

But it takes it’s toll. Even if I do not have a physical day at work, I still end the day exhausted. And some days have to be physical as there is a lot of cleaning up and organising my poorly neglected office needs.

So I spread that work out and make sure I have whole days of just sitting at my desk doing other things.

But even on those days I do 5,000 steps without even trying. Just from walking around the office.

It will become somewhat easier in a few months when we buy a car, because I won’t need to do any of the walking I do now to get to work. It’s not much, but what it is takes some of my energy. Not that driving isn’t tiring, but I don’t find it tiring in the same way.

But what I really want is to not have to wear the facade, ever. 

But I have to. 

Because my kind of illness? The invisible kind? Is still not believed by a whole lotta people. 

So if I grimace in pain, or don’t laugh off my word confusions or give in to the exhaustion as often as I truly want to, then people would think I was faking. Pretending to be ill.

When, really, I’m pretending to be well.