Tuesday, May 23, 2017

MTHFR, ME/CFS and relationships

J & I met under unique circumstances.

I knew his family. His family knew me and also knew 'of' my health issues.

He knew a little, but not much - enough to know that I was having health issues.

While I never hid my health issues from him, I also didn't 'unload' a ton of details on him at at once.

During the first few dates I managed my activity levels (pacing) and when date ideas were being discussed or activities that one of us might like, I did talk about the fact that I have to manage my physical activity levels. He took it at face value, and didn't really probe very much.

I did talk about my diet restrictions and being someone who likes to cook, he came up with ideas of things he can make, things he can alter to fit my diet and how he can make meals work better for me.

After a few weeks, J asked if we could 'define the relationship' and if he could call me his girlfriend.

At that point I brought up my health issues (a little) and we talked about why my diet restrictions and energy management was needed briefly.

But it's hard. How much do you tell them? When do you tell them? Do you fall in love and *Hope for the best?*...

He is 1 of a kind, he really is. And he asked that I help him learn as much as possible. But between his ADD & need to take things in small bursts of information that he can spend time thinking about... he asked that I break things into small, short discussions. A little here, a little there. A little more if symptoms popped up.

Add the fact that he's a nurturer & care giver at heart really helped matters.

He notices the symptoms before I'm ready to talk about them. Doesn't like it if I try to dismiss them or wave away his concern.

But it isn't easy being ill and in a relationship... even with someone who seems perfectly suited for me.

1. Energy levels - my energy levels tend towards the I'm-too-tired-to-move to the can-we-just-sit-or-lie-down?

He gets bursts of energy... but he also works nights. Since he tries to switch back to night-time sleeping on the weekends... he also struggles with energy levels. This helps... but there's a lot of times where I can't sleep - and he's sleeping in; or I can't hardly move and he's got energy and things to do.

With compromise and understanding, we seem to be able to make it work - at least for now. I get up when I can't sleep any longer and rest on the couch - then my restlessness doesn't disturb his sleeping and I can get the additional 'relaxation' time I need. When he gets up, I might still lie on the couch, but he can do his chores and errands - and if I'm up for it, I help as much as I can. If I'm not up for it, he goes about and does it anyway. Compromising on resting more and understanding when it's just not feasible to do anything else.

For the most part, we seem to be in a little bit of a normal cycle of neither of us have enough energy/time to do everything that needs to be done. For the most part (while I was in remission) though, there was enough energy between us to get the worst of it handled.

Only now, I'm crashing. My first full-on relapse since we met, dated, fell in love and got married.  I would say it started a little over a week ago... but honestly, that's just not looking closely at things. Things were getting harder and harder for me to do for several months, and I'd cut back here and there and let things slide. He was getting a lot of OT from work, so he wasn't able to pitch in much either.

As of Sunday a week ago though, I hit the wall. I barely managed to get through the work week, and had to break down and go to the doctor. We're trying a med (it's not working) and this week, I've managed a day and a half before I had to throw up the white flag. I am going to try to work tomorrow, but if it gets as painful as it did today, I'm calling the doc again. I can't focus. I'm in pain, and there's nothing right now to help with the pain. If I can lay still and not move, it backs down to I-can-only-just-tolerate-it, but moving, thinking, picking up my cell phone, anything - and I'm nearly in tears and trying really hard not to cry out.

J is trying. But he's also worrying and stressing and trying to sift through his thoughts. He's trying to take care of me (a bit), but I think I crashed so quickly he isn't fully aware that I can't cook right now, let alone deal with planning a meal, let alone verify what's in the fridge because getting up and walking to the refrigerator and opening the door to look takes my pain from a 6 to an 8 and all I can think of is that I need to lay down again.

I'm posting this here, because I need to vent... to sound off.. to whine a little and to sort through my own thoughts.

When I realized this past week that I really was in a crash (not just a couple of bad days)... I had a fear strike me that this relationship could be a dream and he could decide he can't handle this and walk away. I *know* he loves me and wouldn't likely do that. But I also know how chronic health conditions can tear families apart. But I did talk to him about how I was feeling and how I won't push him away but that doesn't mean I won't have a little fear striking me here and there that this isn't as real as I thought it was and that it's just this impossibly perfect dream relationship that won't last in the real, the challenging, the 'oh-fuck, what now' world we're living in.

Add in a teenage boy pushing limits, fighting with me and his teachers, me flat on my back on the couch feeling helpless and frustrated and angry that I'm here again. Things will get tougher before they get better. All I can do is hope that by aggressively resting I can find my way back to partial functioning like I was before.

Tuesday, July 26, 2016

But what a ring it is!

I didn't set out to find a good deal on my engagement & wedding rings.

I set out to find a ring that suited me.

I am NOT a fan of the current style of a large square or emerald cut diamond surrounded by smaller diamonds.

I like glitter and I like diamonds... but I'm an amethyst/ruby/sapphire girl at heart. I like COLOR.

And I like flow, curved metal, a flow or a swirl.

....

I asked my fiance (before he was my fiance) if we could pick out the rings together. So a couple of weeks after he asked and I accepted... we went to the first jewelry store.

I knew what I wanted wasn't necessarily going to be easy to find since it was bucking the current trends. And that, in fact, we might have to find someone to design the ring for me. At that thought, I was a little nervous about the cost of a custom designed ring. BUT... I also knew that my heart wasn't going to be happy 'settling'. I'd settled before on my ring; and gotten divorced twice. THAT was not something I was willing to repeat (either, in case you have doubts).

...

We walked into the store and when I asked if they had any thing that would have an amethyst and would work for an engagement ring, I got a 'look'... a 'huh'? why on earth? blank stare.  But she dutifully showed me the three amethyst rings that they had on the floor. Yep, nope... not what I was looking for.

Another woman working at the shop picked up on the discussion and saved the day. She got creative and suggested that we look at some pre-set wedding rings which don't have the center stone in them yet - with the idea that we can add an amethyst instead of adding a diamond to the center.

This was closer, but none of the rings they had quite suited the look I was hoping for. They were very rigid and geometric and none of the natural or organic flow to them. After showing me about four or five and asking the right kind of questions... she came back with another suggestion.

She asked the first saleswoman to go get the 'swirly one' out of the clearance cabinet.

Yep... that WAS THE ONE. It's got bling and swirl and organic structure... add a beautiful amethyst in the middle and I was SOLD. AND it was on clearance. AND there was a coordinating wedding band that matched PERFECTLY. And believe it or not, they were both in the size I needed.

My fiance took me to the side, asked me if I wanted to sleep on it. I was pretty sure he was worried I was getting swept away. But ... I looked at him and said I'd be happy to wait to make the purchase official... but I don't need to look at any other rings. We've found the ring that's JUST RIGHT FOR ME.

He couldn't picture the amethyst in the ring... the saleswoman held an amethyst earing near the setting, but he just couldn't see it as a final ring.

They gave us the price for the two rings, plus the cost of a lifetime warranty, plus the cost of adding the amethyst without the actual cost of the stone (to be determined once they found the right stone)... plus the cost of his own wedding band that we found about 15 minutes after we found my ring and while we were working on the paperwork for my rings. That number was about half of what he was thinking it would cost. And about $1k lower than I was thinking I would spend ... lol.

And then they called him and told him that the amethyst itself was $50. Yep ... $50. He was a little floored.

Like I said, I didn't go out seeking a frugal ring. I set out to find a ring that suited me.

I love the dark of the stone and the flare of the diamonds and how they set each other off from each other.


Monday, July 25, 2016

And then there's a ring

The last several months have been a flurry of activity.

J  spent two months hinting about proposing with me putting it off, saying I'm not ready yet. But, it's good he did... because by the time he did propose I'd had time to really think about my answer. I didn't even let him finish his question before I responded with a "yes, yes, Yes!!!".

I still have some nervousness about my health issues and dealing with remission. But, I can't imagine a single person in this world with more compassion and care of me - who could handle it as well as I expect him to. He's a care giver at heart. Examples:

His adult son needed to move home after his roommate and he ended up not being able to stay together as roommates. His response? Come home... you can stay as long as you need to.

He found an adorable cat to adopt... too sick to come home, he covered the medical costs, got him treated and dental work done and took him home as soon as he could. Seriously, he adopted an ill cat without thinking twice. (I thought I was the only one who did things like this).

A robin laid eggs in his climbing rose bush between the vines and the arbor just outside his kitchen window. The weight of the growing babies caused the nest to start to slide into an alarming slant. He spent two hours trying to bend wires and come up with a solution to support the nest until the babies could fly away to keep them from falling out and getting injured by the thorns or by the fall itself. (Together we saved the nest... the babies left the nest the following week - we're hoping due to a successful learning curve in flying).

Even my own 13 yr old - little a.... he's been thoughtful enough to think about things that concern him. His eyesight has gotten really bad and peripheral vision is almost non-existent. At 13, he's still sleeping with the lights on and I've tried to explain that between dealing with anxiety issues and vision issues, I've been trying to be patient and let him have the light he needs to get a good nights sleep right now and let time and hopefully improvements in anxiety take effect... because as much as I want the light bill to drop back to normal? right now it's little a's ability to sleep through the night matters more.  He took this information and processed it and gained insight into it above what I even understood. ... He told me that he spent a little time trying to put on little a's shoes and his eyes and think about what a semi-dark or darkened room might look like. If there were shadows but you couldn't see what was causing them, and turning your head made more of the room harder to see... well, of course having shadows would make you nervous. Add in anxiety where you tend to struggle and focus on the 'worry' about what it might be... add in vision issues that mean that unless you get out of bed and walk to within a foot of the shadow you still don't know what it is? Well, no wonder he's scared of sleeping in the dark. I would be too.

(melted my heard a bit on that one... I had never thought of it that way)

I've had time to really delve into my feelings... am I getting swept away by the romance of it all (well, ok, yes, maybe a little) ... but really - the reality is this. He's handsome & kind. He's considerate... he spends time thinking about ways to get me to smile, to lesson my stress, to get a laugh out of me. The chemistry is awesome. He even likes to cuddle (which really helps with the fact that I need to spend an above average amount of time resting and relaxing). (never met a man that could handle cuddling unless it was a means to an end). He's level-headed...  and set in trying to be a good man - to me, for me and with me.

My heart wanted to go to him before my brain was ready. I kept waiting for the 'truth' of his behavior to tell me he wasn't the man he said he was. We've been dating/engaged for 13 1/2 months now... and he hasn't lied once... he hasn't held things from me  (well, ok, he did wait to tell me he wanted to marry me... but that was pretty smart for him to get me well enough to know I wouldn't have been able to handle that after the second date). From the very beginning we have been very forthright and honest with each other. Which is very, very good because I'll be honest... so many men have lied, misled and/or cheated on me,... It's to the point where I don't really believe anything a man who wants to sleep with me says - UNTIL he proves he's telling the truth. Well, this one... he's proven himself over and over again. He's who he says he is (and he's adorable), he's attracted to me and willing to tell me so and call me beautiful on a daily basis. He's crushed if something happens to his cell phone and we can't text during the day or have our phone calls at night (he works nights, sleeps in the evenings - so other than texts/calls - we don't see each other much during the week).

He may not be perfect, but he's mine and I love him with all my heart. It took a good five months for the walls to come down enough for me to let him propose. But he was adamant and persistent and patient. He, too, still has a few walls we need to work on next (dealing with living with each other - as he hasn't moved in yet). I think I still have a few that aren't going to be visible until we run into them.

Now we just have to figure out how to get through a wedding, a move, a honeymoon all landing this fall... without going crazy or getting overstressed or over stepping budgets... ha! Can't wait to see how this is going to all work out.

Monday, September 14, 2015

Three months in...

J & I are getting pretty serious.

He's there when I need him, be it busy weekend, or just spending a lazy afternoon just hanging out.

He broke down and admitted something he couldn't have told me before....

He knew by our second date that he wanted to marry him.

Good thing he's smart enough to know better than to tell me that then.

He's told me he wants to live together and that he wants to start shopping for rings... I'm ready for the first, not sure I'm ready for the second and told him so.

Right now he thinks I don't want the ring shopping to happen because it's only been three months. And that certainly is part of it.

But part of it is that I've been in remission from my health issues all summer... and he has seen me tired and needing more rest than some women my age and he's seen me pace myself... but he hasn't seen me out for the count. I know how hard it is for me to define and discuss my health issues and we've talked about it... but ...

I just think he needs to live through a flare up before we get married.

I don't think it'll be a problem. But I know that it will be a shock. And I just think it would only be fair to give him a chance to see it for himself before we make things official.

We've spent the night together at hotels... and when Alex is at his dad's I've spent the weekend at his house. This coming weekend we're thinking Alex will come along for one night just to try merging our families together for short term trials. I'm a little concerned that he still hasn't spent the night at my house, but I'm thinking it will probably be something we'll try to do shortly.

It's definitely going to be an adjustment. His house is almost always quiet and calm... my house tends to go from empty to chaos in no time at all.

We haven't talked yet about where we'll live. My thoughts are filled with what won't work, not with what do we do to make something work. So, the weekend trials are meant to help us both see what will work and what won't work and give us a chance to think about how to fix the issues. I honestly think that in the end we need a bigger house than either of us owns. But, buying a house together is NOT something I'm ready to leap into.

I'm hoping that since Alex has 8 months left at his current school that I can convince him into temporarily living with us until next summer and let his son live alone (he's 27 & between apartments) at his house. We can pop in for the weekends and help take care of household chores and duties that his son isn't keeping up on. Then next summer we can make new plans for the following school year. Maybe by then putting up two houses for sale and buying a house won't be as panic-inducing as it would be now.

Tuesday, July 21, 2015

Six weeks in, and I'm in trouble

J & I have been dating for almost six weeks now. BF/GF for four weeks (he was determined to label our relationship and have a conversation; during which he formally asked if he could call me his girlfriend!!!).

The first two weeks it was great.

The next week was my first week of vacation and it was amazing.

The following week he was on vacation and I was partly on vacation and it was even more amazing.

Then the week we were both back to work full-time it was harder. He works around 11:30pm to around 8:30 am; I work 8:00 am to around 8:00 pm (right now, rough hours)... he usually sleeps from around 2:30pm to 9:30 pm... which means very limited time during the week.  But we planned a lunch date during the week and it was great.

But then this weekend hit.

Friday night was an 8 yr old birthday party (fun and great and his whole family was there and -of course- checking us out). Funny enough, I'm no longer enough when I go alone to these events. Every single person wanted to know why J wasn't with me as apparently I am no longer an individual, but half of a couple - lol.

We went out for dinner afterwards and crashed for a while.

But Saturday? Saturday was filled with issues. I had to work during the day and he needed to catch up on some yard work. By the time it was time for our date? My son had called - he was uber-sick and so was the baby - and can mom come help? I picked up the baby and had the 8 yr old dropped off at my house and basically spent the rest of the night dealing with a sick baby who wanted not much else except to be held by nana.

The kids spent the night on Saturday... by Sunday the baby was feeling better (but then again, after only four hours of sleep, I wasn't so much). By the time the kids went home on Sunday, J had already left to take a nap before his next shift.

Every single thing we had planned for Sunday went bust. But what did he do? He came to my house to help babysit. He sat with the older boys and watched a movie with them... helped clean up the kitchen a bit... took out the trash, all without being asked. He said he would have done more if he'd known what to do... sigh.

Sunday he stopped out again... and spent some time playing with the baby so I could take it easy, helping with the boys again... and wow. Not one complaint.

Not that we weren't a little disappointed that the kids were ill and that our own plans got derailed. But, he was there for me. 100% there for me.

This week, we're back to work and have a lunch date for tomorrow. I'm experiencing some warning signs that I sure hope don't mean I'm getting it next.... so far so good, but basically besides crossing my fingers, I'm compulsively washing hands, using germx and lysol and just trying not to overdo it.

We've got plans for this weekend... and next weekend is a romantic get away with the youngest going to his dad's for a week (plus J is taking a week of vacation and I'm getting away with a couple of days of vacation)!

In the meantime? I'm seriously falling for the guy who steps in and steps up when his girlfriend's grandchildren need her.

Thursday, June 11, 2015

Slow Progress, but progress none-the-less

I've been doing 5 days on supplements, 2 days off.
Then 3 weeks of that on, and 1 week off.
Then 3 months of that on, and 1 month off.

And while I haven't noticed any sudden improvements, I've also not noticed any declines. I did overdo things a little bit a couple of times, rested thoroughly afterwards for several days which seemed to expediate my recovery.

But, lately, when the alarm goes off... I'm still in my deepest sleep cycle, but instead of taking multiple alarm clocks, turning on the tv at some point to try to 'raise' my alertness level to the point of being able to get out of bed.... I'm now able to get up only after hitting snooze for about 3 times (this is truly an improvement - a serious improvement). I'm still tired when I wake up; but it's more like the tiredness you would feel after getting six hours of sleep when you need eight; instead of the tired you would feel if you tried to run a marathon without training for it.

I've been able to spend far more time in the living area of my house instead of laid up in bed. I'm still sick, by no means am I cured... it's probably just a remission.

However, I also had to stop my supplements a little early this time around. I was having trouble taking something in the pile, not sure what... but every time my hand got near my mouth, I'd start to gag. And since before all of this started, I was forcing myself to take a supplement that was causing gagging reactions (and in the end, a supplement that was making me toxic)... well, let's just say that if my body starts saying no, I listen now.

I'll wait a couple of weeks and strip down to one or two supplements, see how I feel and add more in until I get the response again and then I can weed out the supplement that I probably shouldn't be taking.

Sunday, June 07, 2015

A good first date

It's been AGES since I've been on a GOOD date.

I went out with Uncle J... and while I was really nervous? I was also really comfortable with him at the same time. (good start)

I'd met him a couple of years ago at one of S's family events - she's my daughter-in-law and her family is always inviting me to tag along. They are super welcoming and since my own family is half-way across the state and rarely get together as it is, it's super nice to feel welcome to spend time with them.

At the time we met, he apparently had just broken up from a long-term relationship that didn't go well and ended badly, so it's only been recently that he's thought about dating.

On Mother's day, I was back in S's father's house. Her grandmother is super sweet and their whole family is very welcoming. I happened to have been sitting in the dining room chatting with folks as they sat with me a bit, moved to the living room a bit, etc. He sat down at the end of the table to just be social and we just chatted. Apparently the thing that stood out the most in his mind to think that maybe I'm someone he wants to get to know better? I was making eye contact and knitting away without looking at what I was doing. He mentioned it at the time and I just laughed it off, and said something about the fact that I'm always knitting... when you do it that often, and it's a simple pattern it really doesn't require too much attention. That I was just making yet another charity hat and how they are great for social events as they keep my hands busy and yet fly off the needles while I'm not even really paying attention.

Then he decided I was a nice person and attractive and he ended up getting my phone number... through my son no less. :-)  I can't believe it was my knitting that started it.

Anyway, we had a great supper and took a little drive to a nice spot to take a walk... then he dropped me off at my car.

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Promising.