Tag Archives: exhaustion

Being a Carer

As most of you know both my parents are nearly 80 – my Mum is physically disabled and an alcoholic and my Dad has learning difficulties and mild dementia.  They both really struggle with the modern world and are clueless when it comes to technology.

When they first got their cordless phone it took them forever to understand that they now had to press the green button to pick up a call and the red button to finish the call – they kept forgetting to press red then nobody could get through.  It also took ages for them to get used to using the phone book and speed dial, but now they love it because they can’t remember anyone’s phone numbers in any event (can any of us?!).

My Dad now also has a mobile phone on which he can make and receive calls although texting is beyond him, however at least he can ring 999 on it if needed and more importantly we can ring him to check he’s OK when he’s out and about.

I live 6 miles from my parents, but there’s currently masses of roadworks and diversions and I have to drive 9 miles to see them making an 18 mile round trip.  As you know, I was out all day yesterday plus have been feeling rubbish all week so today I’m exhausted but I always ring my parents every morning to check they’re OK…………..and this morning the phone rang and rang and rang and not only did no-one pick up the answer phone didn’t kick in.  Summat was up (as we say in the north).  I eventually got through on my Dad’s mobile, though, so at least knew they were both fine but there was clearly an issue with the landline.

So after I took Bertie out this afternoon I drove the 9 miles into town to discover the base wasn’t working on their cordless phone so neither of the handsets could make or receive a call.  I tried everything Google told me to do and eventually concluded the base had become faulty and would have to go back to Amazon (luckily it’s under warranty).  However, this left them without a landline, vital for Mum should Dad be out and have taken his mobile with him.

So I drove the 9 miles home, picked up an old corded landline phone I keep in case of power cuts, and drove the 9 miles back into town with it.  I plugged it in, rang my mobile on it to make sure it was working, showed mum how to use it and drove the 9 miles back home again.  By this time it was 4.30pm and, as I’m usually in bed by then, I was feeling pretty ropey.

I was just about to get into my pjs when my mobile rang – it was my Mum, using my Dad’s mobile to ring me to say that she’d tried to use the corded phone to ring me but it said ‘number not recognized’.  So I patiently, again, went through how to ring out on the corded phone (“don’t press any other buttons than the numbers” I tell her, “there’s no green or red buttons like on the other phone”).  I asked my Mum to try it again and ring me back.  Nothing.  So I rang the mobile back only to get a voice telling me the call could not be made.  So I tried ringing the landline, only of course it was engaged as my Mum was trying to ring me.  *sigh*.

Eventually Mum gave up trying to ring me so I could then ring her. “What’s happening?” I ask.
“The stupid bloody phone still won’t work” she replies testily and now your Dad’s mobile is saying “sim not recognized”.  I have no fucking clue what they’d done but were effectively now without a phone to ring the emergency services if needed.  I told her to put my Dad on the line, asked him to turn his mobile off and back on again, and he said he had but it still said “sim not recognized”.  FFS.  I couldn’t leave them like that all night, so in my slippers I bundle Bertie back in the car and drive the 9 mile back to town.

I tried ringing my mobile from the corded landline phone and it worked a treat.  I also called my home phone and it worked a treat.  “Well it wasn’t working when I did it!” my Mum shouted at me, obviously embarrassed that the phone was clearly fine she had just pressed something she shouldn’t.  So, using every ounce of patience I possess, I went through yet again how to dial out on the phone when what I actually wanted to say was “well if you weren’t bloody drunk all the time you might manage better!”

I then turned my Dad’s mobile off and back on again and it, too, was working perfectly.

I got back in the car and drove the 9 miles home.  I now feel too sick with tiredness to even contemplate eating my dinner and the much needed bath I was going to have has gone out the window as I no longer have the energy.

Things like this happen week in week out, month in month out, year in year out.  Caring for elderly and confused relatives isn’t just about hospital appointments or putting the bins out – it’s about the million and one little things which frazzle your nerves, test your patience and drain you of energy.  And it’s all doubly difficult when you’re ill yourself and have no-one caring for you.

Thank you for listening to my little rant – I have no-one else to tell y’see and it always helps the frustration to put it down on paper.  The shitty part is I know my Mum still can’t use the corded phone and neither could my Dad if needed, so basically it’s all been a great big waste of time and energy.  I’m off to order a replacement cordless phone with next day delivery on Amazon and to arrange to send the faulty one back.

 

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Anaemia update

Last Christmas I realized I was feeling ropey and had been feeling extra rubbish for quite some time.  I was dizzy, constantly.  I could be sitting watching TV and all of a sudden the room would lurch to the left and back again, and there were days when every time I moved my head the world tilted on its axis.  I could sleep for 8 hours straight which is unheard of for me and two hours later need to go back to sleep (I’ve never slept during the day no matter how ill I’ve ever been not least because ME has given me horrific insomnia).  My brain was so fuzzy I literally couldn’t form cohesive thoughts and I had exhaustion so profound some days I couldn’t get off the couch.

Of course, all of these are symptoms of my pre-existing conditions but this felt totally different to my normal rubbish-ness and I knew I wasn’t having an M.E. relapse or a mast cell or EDS flare.  No, something else was going on and I instinctively knew it was related to my iron levels particularly as when I had my period I was absolutely poleaxed.

As outlined in my first post on Anaemia back in February I have several risk factors for iron deficiency and, coupled with my peri-menopause and worsening endometriosis, I knew I needed to get my ferritin levels checked.  They unsurprisingly came back at 17 which according to the lab results was right on the bottom rung of ‘normal’ (17-291), though realistically in order to feel well you should have a ferritin level of at least 50 and preferably above 90.  My vitamin D was also considered sub-clinically low, ie outside the normal range.  My GP dismissed anaemia though because my red blood count was fine and basically just fobbed me off, however she wasn’t the one feeling so crap she couldn’t function so I started on some over-the-counter supplements.

My mast cells seem to hate tablets of all descriptions, so my options are limited to liquids and syrups which are few and far between.  In addition, many of the liquid iron preparations such as Floradix contained all sorts of ingredients I didn’t want or need such as apples (to which I’m mildly truly allergic), spinach, nettles and CoQ10.  So I opted for the ‘Get More Vitamin D mango & passionfruit‘ drink and ‘Spatone‘ natural iron water both of which I could have delivered with my groceries from Tesco.

I have about 200ml of the Vitamin D drink each day, which tastes OK but not brilliant, and gives me 80% of the recommended daily allowance of Vitamin D.  According to my GP, the lab won’t re-test Vitamin D for 12 months so I’ve no idea whether or not my levels have improved after nearly 10 months of supplementation.

Spatone is a sachet of naturally iron rich water which I take mixed in pear juice (the vitamin C aids absorption of the iron and disguises the awful metallic taste).  Iron supplements are, however, notorious for causing nausea, reflux, constipation or diarrhoea and I must admit after 4 days on Spatone I felt sick 24/7 and had awful colic-like stomach pain.  So I had a break for a week, then re-started the sachets but just taking a teaspoon per day and gradually working up to a full sachet.  This worked fine and I had no side-effects whatsoever 🙂

Within a week of starting Spatone my dizziness almost disappeared and I did feel a bit less tired which was great, but unfortunately for me the effects haven’t lasted.  By September I was starting to feel battered by exhaustion again, wanted to sleep for England, was as white as a sheet and feeling constantly dizzy.  In addition I seem to have developed tinnitus, which is a constant low level high pitched ringing hiss in my ears, and I’ve noticed a change in my toe nails (but not my finger nails!).  One of my toe nails has split and despite the nail continuing to grow it just keeps splitting in the same place, while the other nails have started to flatten at the ends.  Spoon shaped nails are a sign of anaemia, but when you Google images you only see horrendous photos at the severe end of the spectrum which bear no resemblance to my mildly flattened nails.  So here’s a couple of pictures of what’s happening for me:


I doubled my dose of Spatone but it didn’t help.  In fact, my symptoms continued to get worse so I rang my GP again, who tried to fob me off by saying that as I already have ME the peri-menopause is going to knock me about, but I tried calmly to explain that I know what ME feels like and this is completely different.  I insisted I wanted my bloods done again, in particular my ferritin and thyroid, although I’m sure my thyroid is fine as I’m not cold and have had no weight loss or gain issues other than that expected of going through The Change.  The first appointment for a blood draw I could get isn’t until 7th December (!), then of course it has to be sent to the lab, analysed and the results sent back to my GP by which time it will be sodding Christmas and everything will grind to a halt until January when it will be so busy getting another appointment with my GP to discuss the results will be impossible.  So I’m now trying to find a different liquid iron supplement to take but am so far struggling.  The thought of feeling this awful for at least the next several weeks, and in particular over Christmas, is pretty depressing.

When you have a chronic disease doctors do tend to put every single symptom you have down to that and it’s often a fight to get them to investigate new symptoms.  But investigate them you must, because it’s been my experience that all the new symptoms I’ve developed over the years have been down to hitherto unknown diseases and were nothing to do with my pre-existing M.E.  In particular, trying to get my chronic pain recognized was a mare because all the doctors I saw simply put it down to part of parcel of M.E. or tried to diagnose me with Fibromyalgia when I knew it was something else, which of course turned out to be Ehlers-Danlos Syndrome.  Then my stomach issues were put down to my EDS, when they turned out to be Mast Cell Disease.  And now my rubbish-ness is being put down to the peri-menopause or my M.E. when it’s going to turn out to be anaemia or at the least iron deficiency.

It’s so hard to fight the medical profession for treatment when you are this exhausted and there are days I feel like putting up and shutting up, but unfortunately that’s not an option when I am so floored I can barely get through the day.  So I shall keep on plugging away until I find out what’s actually going on and come up with a solution.

 

 

 

 

Peri-menopause update

This post isn’t meant to be whiney because I personally feel menopause is a natural event and just something we women have to get through.  That being said, I write about it because it‘s still challenging and I personally trawl the message boards looking for other women having the same symptoms as me so that I know what I’m experiencing is ‘normal’.  Well, as normal as you can get when you live with 4 other diseases (I’m now counting my Endometriosis and Adenomyosis as a disease in its own right, because I suffer from the symptoms every day of my life).

My menstrual cycle starting changing in 2012.  I’ve always been regular as clockwork, sometimes down to the hour, with a 27/28 day cycle but in 2012 this shifted slightly and for the first time in my life I experienced 30 day cycles, and 26 day cycles, and everything in between.  As the years have ticked by my cycles have been consistently longer, or consistently shorter and this month I’ve had my shortest one to date at 19 days.  It’s come as a bit of a shock because my vision of peri-menopause was that my cycles would get longer and longer and then just peter out but the reality is that my cycles have been all over the place, and on the whole shorter than usual not longer.  This apparently happens in the first two phases of perimenopause and only in the latter two stages does the cycle lengthen.

Other than my cycles being a bit nuts I’ve had virtually no other symptoms.  I can count my hot flushes on one hand, though I’m sure these will increase the further along the line I get, and I’ve noticed no worsening of my pre-existing insomnia.  In fact I sometimes think my deep sleep has improved.

I do get night sweats.  Well they’re not sweats as such, I just feel like my legs are on fire.  By 9pm every night it’s like someone’s flicked a switch and my legs are boiling hot and jumpy.  However, I’ve had restless legs my whole life so this isn’t new to me and the hot leg thing has been happening for about a decade now so whether it’s caused by my pre-existing illnesses or part of my hormonal changes I’ll never know.

I’ve luckily never suffered from PMT.  I can have a short fuse, or be a bit weepy, around my period but nothing that has ever interfered with my life and at the moment this hasn’t altered.  I have had two or three massive meltdowns in the past 3 years which are totally out of character for me, but these could be as a result of my own stressful health situation and having to adjust to caring for my parents every bit as much as they could be down to the perimenopause.  There have definitely been times, though, where I’ve been snappier than usual and felt boiling rage for no particular reason which is definitely hormone related.

Bleeding-wise my periods are heavier.  They don’t last any longer, but the flow has increased and is much more clotty than it used to be.  I usually have a break from bleeding after day 3, only for it to return on days 5 or 6 which isn’t usual for me though from what I read is normal for perimenopause.

My menstrual migraines have definitely increased this year which is a bummer.  I can only pray I’m not in for too rocky a road in that direction over the coming years as my hormones surge, crash and finally burn.

Many women complain of increased joint pain and muscle weakness during this time of their lives and I’ve had my fair share of both.  I feel like I’ve turned into a pensioner overnight and do the whole “oomf” thing every time I get out of the chair 😉  I can still crouch down to get something out of a drawer but genuinely struggle to get back up again. Whether this is an EDS thing or a hormone thing, or a combination of both, is impossible to know.  I’m 48 going on 78!

This month my short period has hit me hard in the exhaustion stakes.  I took Bertie out Saturday morning, came back at 11am and had to go back to bed where I slept until 1pm.  This was repeated on Sunday, and both times after I’d woken back up I felt like I’d been hit by a truck and was useless for the rest of the day.  This morning I’ve woken feeling just as weak and knackered but I’ve got too much on to be able to snooze the day away.  In my 22 years of having M.E. I’ve never been able to sleep during the day, even when I’ve only had 1 hours sleep at night, so this daylight kipping is totally new to me and makes me feel like crap.  As I’m typing this I feel like someone’s slipped me a couple of Valium and my brain feels so foggy I simply want to lay my head down and sink into oblivion!

Perimenopause is supposed to last between 1 and 10 years, though most doctors wrongly tell you it will last 2 years and you’ll be done (I wish!).  This is year 4 for me and it feels like very little is changing – my periods are continuing on their up down up down course and not really moving on.  So far the experience isn’t at all like I expected and is better than the horror stories I’ve read online.  Or it could be that I simply cope with the changes in my body better than healthy women as I’m used to feeling rubbish all the time anyway.  Maybe I’m in for a rude awakening in the next couple of years as the whole thing goes belly up but I hope, just for once, I’ll catch a break – I think I deserve that at least!