Fatigue

I’d say over the past six or more months I’ve needed extra sleep at the weekends in order to get by.  I go to bed at a reasonable hour on Friday night.  I’m up at the usual time on Saturday morning.  I have an extra hour or so during the day and repeat the process on Sunday.  The fatigue has grown from just needing a nap on one of the weekend days to both weekend days.  Just before I go to bed for my afternoon naps I get the oddest sensation – I’m not exactly tired, it’s more as if I’ve already gone to bed and I’m dreaming.  Someone has switched off my brain and my eyes are showing their “no one’s home” signs.

During the week I’ve coped reasonably well without the extra sleep during the day.  Aside from PMT times, I’ve been alert and sharp.

I was a bit disturbed when my brain switched off last night.  About 8pm I was finishing off a few emails, facebook posts, etc when all my sense was switched off.  Despite being keen to watch the rest of the football game, I was unable to keep my eyes open and I dragged myself to bed at 8:30.

I can’t help but wonder if there was something different about yesterday that made me more tired than usual: I was having some sharp pain in my ovaries during the day.

Or is my body reacting to the exercise I’m getting in going to and from work?  The last time I got this much exercise it was the summer of 2010 and I was going out at 6am for a walk to and from the station and still had plenty of time to get ready and meet my friend to carpool to work.  Of course all that stopped when those horrid miscreants made me think I was going to be murdered and my mangy carcass thrown into a field…  I still occasionally think about that day but I’m not filled with dread anymore.  My home town is stupidly safe.  I rarely have to remind myself of it now.  Also, these days I carry items that would help me defend myself – nothing scary.  Sometimes I just roll up a newspaper – a jab in a delicate place with a rolled up newspaper would easily enable me to slow down an attacker enough to let me get away safely.  Don’t let the Hollywood films fool you – if you’ve managed to stop an attacker – run for your life!  Don’t stop until you get somewhere safe.  Then call the police.

Or am I not feeling myself because I need to have a period? The first day of my most recent one was 27^thAugust.  I probably should have given myself one when Helios and I were on holiday in  November but I was so busy that I didn’t want to – and who could blame me really? My periods are bad enough now that I really need three days to get the worst of it out of my system and the next time I have enough time off work is at Christmas.  While I’ve got all the time off between Christmas and New Year, it won’t necessarily be a pleasant holiday.

Hanging on until Christmas may be a challenge because, aside from the curiously-strong fatigue, I am having dull pain most days, sharp pain in my ovaries at times and a slight bleed through on some days.  This after I insisted that I don’t have any blood apart when I’m getting my period…  I doubt it’s a sign of something sinister.  I’m probably still not accustomed enough to having longer and longer cycles.

When I finally get my surgery dates I’ll think about having another period while I’m off with that – with any luck I’ll be on so much medication that any more pain won’t be an issue.  (?)

It’s at times like this that I’m ever so grateful that I’m accustomed to being organised because my brain isn’t working properly. For the past couple of days, particularly in the afternoon, I’m getting that woolly-headed feeling where I’m in a bit of a daze.  I used to feel like this when I had fruit and yoghurt for breakfast and I’d wind up being in a mess for the rest of the afternoon.  However, I know it’s not my diet because I’m having my usual egg/mayonnaise sandwich in the mornings (on low-GI bread) and for lunch for the past couple of weeks it’s been turkey with tomato, green pepper, low-GI Rye crisp breads and humus.   A couple of days ago I tried a wheat pita at lunchtime with my obligatory seeds in and within an hour I looked about six months pregnant.  when I’m most certainly not!  Did I have a reaction to  wheat? Within a few hours all had settled back down again but the incident made me wonder if there is anything else that I ought to be avoiding…  I’ve made an initial appointment with a food tolerance expert to see what else I can be doing.

You may remember that I’m on a slightly restricted diet anyway due to my insulin resistance.  When I first started getting diagnosed with my many maladies, I was told I had PCOS and insulin resistance.  For the insulin resistance, I was told to limit my carbohydrate intake to 20g per meal per day; I started lose weight and feel like my old self after a month or two.  Of course, I was depressed and my endometriosis diagnosis was in my future.  My entire life needed changing in order to feel happy but the change of diet was a good start.  At that point I didn’t notice any odd bloating, but so many things on my body seem to have given up working since then that I feel a bit of a lemon!

My interest was piqued when one of the gals at work did a food-intolerance test just about three weeks ago and now she’s been following the regime and she’s looking amazing.  I don’t know how much weight she’s lost but because she’s only taking on board exactly what she needs, her body is obviously happier for it.

Foxy

About last night

Mom, I know you like reading this blog so I’ll make sure to keep the gory details to a minimum!  If, despite my efforts, you’re still grossed out – you can’t say you’ve not been warned.

My wonderful Helios and I were fooling around last night.  It was fabulous as always.  After the proceedings, I felt odd and uncomfortable.  My womb wasn’t quite right.  I was spotting.  I wasn’t sure if I should take a paracetamol but dozed off safe in the knowledge that I could sleep through the night.

Unfortunately I woke up from pain at 12:30.  By this time the pain was shooting down my legs.  I was still spotting.  I decided to take a paracetamol/codeine and went back to bed.

I spent the next hour trying not to wake Helios.  I was tormented with thoughts of my endometriosis.  Should I go to work tomorrow?  I have to go to work tomorrow – no choice.  I’ve got plans.  But I won’t be able to function under this kind of pain.  Would I go to work but then come home if I can’t take it?  No.  I really needed the whole day.  Why do things always seem worse in the middle of the night?

I crawled over Helios again to go to the toilet at 1:30 a.m.and the pain was beginning to abate.  I was still unconvinced.  I just couldn’t decide if I should try to sleep on the couch.  I went back to bed and crawled over Helios.  It didn’t take long when I finally drifted off.

This morning I woke up, got out of bed and immediately had some breakfast and a mefanamic acid tablet.  I was still uncomfortable but was desperate to ensure I could work well.

It worked.  I managed to get to work and held off the pain well enough that no one at work could imagine what I’d been through the night before.  I’m still spotting.

The experience has convinced me that I need to make sure to have a period this weekend coming.  I had my last period in March.  I’ve managed to hold off pain for a number of months instead of weeks.  Since March I had a number of issues with bloating and PMT but, in an effort to control my pain, I really can’t complain.  However, I may feel differently this weekend!

Foxy

Nine Weeks

During week seven I had some pain on the Wednesday: the usual period pain but not nearly so strong.  Unsurprisingly the next day I had a bit of spotting which left me in my usual panic – do I have a period or not.  I decided to wait for another week in the hopes that my spotting would stop.  My right ovary is very uncomfortable – it’s as if it’s stuck against something inside again.

Luckily the spotting and pain has stopped.  Both ovaries are uncomfortable.  It’s not all the time and not severe but when I feel it I can’t help but wonder.

Week eight has passed without incident.  My bloating has abated; my PMT has nearly disappeared.  I’m starting to wonder if those few days of discomfort during week seven was actually a “ghost period” and now I can get on with stretching my time between periods even longer.  Who knows?  I may stretch it to once every six months like the doctor at my colposcopy suggested!

Speaking of biopsies, I got my test results after the colposcopy.  The biopsy came back negative.  I have another follow up in September for another smear test.  I’ll mention the ovarian pain again and get any reassurance I need for just two periods per year.

I will admit to being very tired.  Last weekend and this weekend I’ve found myself needing a nap at least once or else fall asleep uncomfortably on the couch.  Of course if I find the fatigue too much, I’ll give myself a period and see how things go from there.

Today is another Bank Holiday in England so Helios and I are watching movies and relaxing.  Helios is ironing and I’m trying not to fall asleep on the couch again.  My right shoulder is still sore.  It’s been sore for a number of days – or even weeks.  While over the counter painkillers and Deep Heat help, it’s never long before the pain comes back.  Particularly beneath my shoulder blade has a number of painful knots.  I’m debating going to the doctor or just getting a proper back, shoulder and neck massage to see what helps.

Foxy

Buckingham Palace

Last night I dreamt I was in Buckingham Palace and needed the loo.  So I went to every loo in the place – there were ones with dark wood panelled walls, art deco ones, and even one was so low to the ground that I would have had to hover in order to pee!  I finally decided that I needed a pee but knew I was dreaming.  I even pinched myself and smacked myself in the face.  I knew I was dreaming.  So I woke up, crawled over Helios (as I always do because our bedroom is so small) and walked out the bedroom door to Buckingham Palace.  I went straight across the corridor and found a toilet that reminded me of a janitor’s closet.  I started to sit down to pee but thought “I’m still dreaming!”  So I woke up, crawled over Helios (as I always do) and walked to the loo in our flat and pinched myself before I sat down.  It hurt that time so I knew I was awake.

Yesterday I was having some cramping period pain.  I took some painkillers, which was OK.  I found the fact that I was in pain worrying.  Today I’ve had no pain but a little spotting.  I’m still going back and forth with whether I should give myself a period sooner or later.  One minute I think “I need to have one so my bloating will go down,” and “My body is demanding a period.”  The next minute I think “I was told to expect a little spotting between my periods if I run pill packs together” and “I don’t want to be in pain this weekend.  I don’t want to be in pain next weekend.  When can I organise my period around my life?”  I think I’ve decided to carry on with the pills until next week and see how I get along.

In the meantime, aside from the odd dream, I’m sleeping well.  I’m just very tired by the end of the working day.  Hopefully it will pass once my body realises that I’m in charge and not it.  (!)

Foxy

Work is kicking my butt!

The company is being taken over by a different branch of the same company and we have to write to all our clients to tell them that none of the people at our office have changed and we’re only changing one word in the title of the business.  All the clients!  I’ve spent the past three or four days at work pouring over lists, producing letters and pouring over more lists.

As always my haven is home and Helios.  We’ve been listening to a number of football games on the radio and doing housework.  It’s so nice not to have any extreme expectations at home so we can enjoy watching the birds come to the feeding trays.

This past weekend Helios had a work’s extravaganza inLondonand, unfortunately, missed his 11:30 coach home.  The next one was at2:00 a.m.so he wasn’t home much before 4:00 a.m.  I stayed awake watching TV until 2:00 a.m. but then went to bed.  I didn’t manage a good sleep until he arrived.  He got home and crashed but I stayed awake for some of the Dawn Chorus.  (!)  My body clock is so stupid that I woke up again at 8:00 a.m. on Saturday.  I feel I spent the rest of the weekend trying to catch up with myself a little bit.  Or perhaps it’s the usual pre-period exhaustion finally rearing its ugly head?  Or perhaps I’m just tired of working my butt off?

Exhaustedly yours,

Foxy

Seven Weeks

It’s been nearly seven weeks since my last period.  The delay between periods gives me some minor discomforts.  For instance, I’m going back and forth with the size of my stomach.  Some days I look 4 months pregnant and some days I’m just a bit wobbley.  Carrying around a bit of extra weight isn’t a difficult thing – but it was disconcerting to see my actual size in the holiday photographs!  When I look at myself in the mirror I didn’t think my stomach was THAT noticeable but I was clearly wrong!  The other thing about the bloating is that I’ve had the odd occasion where I feel my womb.  It’s not painful, I just happen to know precisely where it is at a given moment – usually when I’m walking downhill.  It’s not uncomfortable but it is odd that I can feel it.  I’m not concerned because I am close to needing to give myself a period so am putting oddness down to my bloating, etc.

My PMT is currently being held in check with Milk Thistle.  OK, I know Mom doesn’t like me taking it but, as a doctor recommended I try it in the first place, I take it once or twice a day when I start to feel the usual shortening of my fuse.  So far it’s been a tremendous help at work – especially since my first week back from a holiday feels particularly long!  Also, the good thing about prolonging my cycle is that I only need painkillers if and when I get a headache!  For those of you who don’t have endometriosis, you have no idea how much money I can easily spend on painkillers and other potions to try and keep my pain in check.  What a relief to only worry about my agonising pain once every 9 weeks (or more)!

The nurse who did my colposcopy mentioned that I don’t have to have a period for six months if I really didn’t want to.  As good as that sounds, I’m also wondering just how bad my bloating will be after six months!?  I’m also wondering if I’ll have PMT symptoms for the next few months?  I’m contemplating going longer between periods this cycle than my prescribed 9 weeks.  So far I’ve not managed to get through a whole 9 weeks without giving myself a period.  I get a bit down with feeling fat and cranky.  I’m still hoping that the longer I go without a period, the easier the next “longer” cycle will be.  I think this cycle is the first time when I’ve been at week seven and thought “Let’s go for a full six months!” but I’ll probably change my mind in the next couple of weeks.  Up until now on the longer cycle, I’ve decided to have a period just shy of the nine weeks because I feel drained.  No.  Drained is a good word but it’s not quite accurate.  I feel as though I’ve not slept in a million years even with a good night’s sleep.  I’m normally a very warm individual but I could stand in the snow and not feel the cold.  It’s not a depression but it’s a definite low.  Sorry, I’m obviously not expressing myself very well.  I’m not feeling the need just yet but know when it happens it will be as strong as ever.

Work is going OK at the moment.  Normally I don’t have so much work to do that I’m stressed out.  This week is busy but not fraught.  The complaint of the week this week is that all of us appear to have forgotten just how long a 5-day week feels.  No doubt next week will be easier – once I’m back into the swing of it.  In a lot of ways it’s a shame that we have to go back to the daily grind, isn’t it?  Wouldn’t it be nice to win the lottery and I could look after my family the way I want: Helios and I could pay off the mortgage, give my mom and my sister some money, give Helios’s parents some money, set up trust funds for Apollo and Maia, get some building work done on our flats, send Helios to University on a film course and start a business so he can get paid for his opinions about cinema.  I’d probably find a part-time job somewhere (perhaps a charity) just to keep a bit of normality in my life and the rest of the time I’ll research endometriosis and blog about what I find.  If only we could win…

This weekend will be spent in the garden with the neighbours and a BBQ.  I hope the weather holds out!

Foxy

Manchester England, England

After an eventful 5 days in France, Helios and I had two days at home before taking another trip, this time up to Manchester.

What a wonderful weekend!  The train wasn’t too busy: we got a seat on the train to London and made good time to Euston to catch our connecting train to Manchester.  We caught the tram from Manchester Piccadilly to the stadium of our favourite English Football team – Manchester United.  OK, I’m sure a lot of you girls have just zoned out but I’ve always been a fan of sports and very much enjoyed the tour, the museum and the view from our hotel room (towards the stadium).

When I initially booked the weekend, the Man U v Chelsea game was scheduled for Saturday.  Unfortunately due to other game commitments, the game was moved to Sunday and we had to find something else to do instead.  Lucky for us, the Imperial War Museum (North) was about 10 minutes’ walk from our hotel.  In case you don’t know, I’m a real history freak so I rubbed my hands together at the prospect of boring Helios for a few hours.  The great things about IWM (North) were – 1) entry is free and 2) there was a slide/photo exhibition which started when all the lights went down.  It was slightly disconcerting: Helios said that he half expected to encounter someone with a gun around the corner!  Then the slide show started over all the walls which included children narrating their experiences of war.  It was a sad but moving experience.  We are very lucky!

Saturday afternoon was spent at the local outlet mall – just a few minutes from IWM (North) and our hotel.  We bought a pair of jeans for me and a sweatshirt for Helios in Gap as everything was half price.  We also bought a couple of waterproof jackets in another shop – also half price.

We had dinner both nights at Frankie & Benny’s – mainly due to the £5 off vouchers Helios downloaded on his mobile.  We had a glass of wine the first evening and we toasted to our birthdays (as the Man U stadium tour was a birthday present to Helios some months ago).

Work so far this week has been a bit surreal.  I feel as though I’ve been away for years rather than just over a week.  I expect it was mainly because we did so much while we were away!

On a personal note, I’m too bloated to be believed at the moment.  I’m contemplating giving myself another period but want to put it off as long as I can just to avoid the usual pain.  Would you rather feel fat or pain?

I’m off to bed.  Good night all!

Foxy

No touch knickers

In anticipation of my biopsy on 30^th March, I’ve allocated myself a period starting this weekend.  It’s not exactly time yet but I have been bloated for a week or two and I’ve been hot generally.  Does anyone else feel so hot at night that they kick the covers off?  I think I’ll probably find having my period a relief.

In anticipation of starting this weekend, I’ve already put on my “no touch knickers”.  These are my large grey-pink granny-knickers that I only wear during this time of my cycle.  I find it a subtle way of telling Helios exactly what’s happening without having to shout “I’m going to have a period”.  Helios saw me sporting these enormous monstrosities and said “No touch knickers already!?!” this morning as if he cannot quite believe the passage of time, or perhaps it’s because he doesn’t like his “week off”?

Today was the first day I didn’t take my pill, so it nothing exciting has happened just yet.  I feel my usual woolly-head and slight disorientation but no pain.  Despite this, I’ve taken a couple of ibuprofen, just to get a grip on the pain before it takes hold of me.

Last night I had even stranger dreams than normal.  I was surrounded by people with green heads and they were being persecuted so I was nice to them and helped them start an uprising.  Bearing in mind I’d seen “The Mask” at the weekend, it’s not such a stretch of imagination – thank God!

Foxy

Endometriosis March: How I live with Endo

How I live with Endo has changed over the years.  When I was 12, the short answer was I didn’t.  I was told by an ignorant doctor that I had “cramps” and that pain was to be expected.  What doctor would consider a child vomiting from pain to be remotely normal??  When I was in my teens I suffered greatly.  I missed some school from pain and when I didn’t stay at home, I would miss key points in classes because I was so zoned out on painkillers.  I don’t really know how I got accepted to university but I must have been smarter than your average bear.

In my 20s I discovered birth control and this effectively masked my symptoms totally.  I had nearly a decade of feeling like a normal woman.  My periods were light and virtually pain-free.  I was relieved from my painful burden.  I did reasonably well at my university course – I even made the dean’s list one semester.  God, I miss those days!!

In my 30s I began to try for babies; what little success I had ended in miscarriage.  The pain was as bad as ever.  I remember once my ex-husband, Ramman, said to me that my pain was ruining any holiday time that we ever had (including when we went to Portugal, the West Country and Greece).  Of course he was insensitive: it’s not as if I was bleeding from the eyes.  He couldn’t see why I was in pain.  When I was finally diagnosed at the age of 35, my ex-husband still couldn’t understand why I was in so much agony.  He made the point that he wasn’t particularly interested in gynaecological matters.  His inability to attempt to sympathise is another reason why he’s now my ex-husband!

I wonder how many other relationships have been destroyed by Endo?

Currently I take birth control for 9 weeks and then allow myself a short period before my lengthened cycle starts again.  It sounds easy enough but PMT can last weeks and I tend to carry a bit of excess water.  However, when faced with the choice of my familiar pain or PMT, I’d rather a bit of PMT (which I treat effectively with Milk Thistle) and feel a bit podgy.  Lucky for me, Helios is sensitive to my plight, he’s never considered me lazy because I need to lay in bed with a hot water bottle; he doesn’t give me any extra stress.  In fact, he told me recently when I was bemoaning my weight/size that I shouldn’t lose any weight: he likes me just how I am.

Foxy

Not just a Step-Mom

Helios and I tried to contact Maia.  Although she replied to me, I’m still unsure exactly what she wants.  I think that she’s still confused but she did say that she’s not happy with a relationship and doesn’t want contact, not even with me at the very least.  As disappointed as I am, I have to respect her wishes.  I have tried to let her know that we’re still here for her no matter what and we’ll be ready for her when she next wants to try.  Of course, I’m still considering contacting her again every so often just to keep in touch – but I’ve not done anything about it just yet.  I don’t want to push her too far in the other direction…  I will admit that every time I get a notification of a new email at the moment, I get a momentary stomach-flutter and hope it’s her.

Now that things have gone quiet with Maia, but Apollo still seems ok with contact, I am managing to drift off to sleep earlier than before.  It’s so hard to drift off to sleep once I get it in my head that I want to talk to either of them.  I suppose now that I know how Maia is feeling about us (even though it’s not positive) I’ve decided to settle into the knowledge that she’s happy (when not confused) and safe.  I do hope she’ll want to try again when she gets a little older and perhaps more mature with relationships.  We can’t give up hope entirely!

In the meantime, Apollo isn’t online as often as before but we still hear from him once a week to once a fortnight.  Again, it’s a relief to know that he’s safe and happy.  I’m looking forward to August and to seeing him again.  I have been reading a series of books that he recommended and I am keen to discuss the writing with him.  He said that he identified with a particular character and, as the character becomes more prominent in the books, I have questions like why he identifies with him and at what point in the story did he realise that he’s like this character?  I’m really enjoying the books but can’t wait to start the next series Apollo recommended…

I’m sleeping a little better now – I go to bed before/at 9:30 (and actually drift off within a reasonable amount of time) and I’m awake between 5:00 and 5:30 most mornings.  Last weekend I managed to sleep in an extra hour in the morning (i.e. up at 6:20 a.m.) and considered myself lucky.  (!)  Helios seems to be able to sleep anywhere at any time and without too much difficulty getting there.  I think it must have something to do with him being ex-military.

So today, having arisen early (5:20 a.m.), I went out for my walk straightaway and jogged part of the way as I felt good about it.  The spring blossoms have shrunk and lost their glory.  I was so early this morning that I was roughly half-way through my walk by the time I normally start.  Bearing that in mind, I went a little further and part-jogged around so that I would get the full benefit of the effort.  I like the walks and having a little time to myself – I find that I wind up talking to myself all the way around.  I hope that’s not a sign of madness!

We are in full summertime flow and suffered our first heatwave of the summer last weekend.  I finally got some help with getting the summer clothes down from the top of the wardrobe and started re-filling the case with jumpers and wintery clothes.  We even had a BBQ with salads on Saturday and Sunday!  I made Helios potato salad for the first time.  I absolutely LOVE potato salad.  I seem to remember making meals of it in the summertime when I was a kid.  Hey Mom!  Do you remember making your turquoise mixing bowl full of potato salad and me demolishing it in no time at all?  Luckily Helios liked it.  He said he wasn’t expecting to but went back for seconds (which I always count as a huge compliment).  Then he requested more on Sunday!  It was so hot that I did laundry at night and put it on the line in the morning.  It was dry by the time I went to get it in the evening!  It’s so nice to let the sun do the work for you.

The forecasters have said that the weather will be going back to more seasonable temperatures so I hope that’s not the last of the summer that we’ll be seeing this year!

My office have organised a team to do the Relay for Life event in July.  The event requires participants to walk around a track/course from 12 midday on a Saturday to 12 midday on a Sunday to raise money for Cancer Research UK .  Initially I was hesitant about doing it as I didn’t want to spend my whole weekend doing it, but it turns out that I can come along and do the morning shift on Sunday.  I plan to get there early (between 6:00 and 7:00) and then take a nap later on in the afternoon at home.  In the meantime, participants are required to raise money in order to take part in the event and Helios and I got our baking gloves on last weekend.  Helios and I made some Walnut Shortbread Cookies that are SO nice!  I’ve been selling them at work to help start off the process.  As soon as I get a formal sponsorship form I’ll send some cookies to the Courts Service for Liz and the gang to contribute.  I also mentioned my plans to my mother in law who pledged £10 – I don’t know why I was surprised!  Probably because I’ve never had support for any of the charity work that I’ve done in the past from Ramman’s family, so I really didn’t expect it, even though I know how generous Helios’s mum is.  I’m really excited about it.  It’s been a long time since I’ve raised money for charity and doing it always makes me feel good.  I don’t know why I stopped but suspect it had something to do with Ramman and his greedy, mercenary, thoughtless, self-centred family…

I got back early from my walk and had an IM conversation with my friend at Autoimmune Life.  She’s still pregnant – keep praying though!  An extra prayer or two for her well-being won’t hurt! Unfortunately I didn’t get much gossip from her because I had to go and get ready for work but I’m always delighted to hear that she’s getting on well.

My new birth control pills are obviously working well so far.  No babies here!  LOL  But seriously, I have noticed my bloating has returned with my time of month impending but my mood is really good so far.  For example, yesterday at work was very hot and everyone seemed to be a bit fraught but I was my cheerful, happy self.  I sat at my desk and wondered why everyone seemed to be so cross without feeling any ill-effects of the PMT I normally expect at this time of month.  OK, I was a little grouchy on Sunday but if my PMT only lasts a couple of hours each month instead of several days, I may have an answer to that side of my health problems!

The only other thing that I’m a little concerned about is the follow up test that I have on 22^nd June after my biopsy turned up “not enough interesting things to speak of”.  I told the gang at work that it was a routine check and didn’t mention the biopsy at all.  I hope that decision (to withhold information) won’t come back to haunt me.

Foxy