Moving On

By the time we reach our 50th year we all have emotional baggage.  I have so much it would fill several airport trollies and need a small army of porters to tow it behind me, which would be both expensive and exhausting.  So at various times in my life I’ve made a choice to leave my suitcases behind.  I now travel along my life’s path with a large hold-all filled only with my most vital and treasured possessions.  It turns out all that baggage I thought I needed, and which made me me, was unnecessary.

As regular readers know, I did not have the best childhood in the world.  My parents lacked education, emotional intelligence and made some very poor decisions.  In my twenties I was really angry about that and the way their choices and behaviour had affected me.  But here’s what I learned: they did not know any better.  They had been taught poor coping mechanisms and interpersonal skills by their parents and were simply living what they’d learned.  By the time I was 30 I had to make a choice to forgive them or move away from them.  I chose forgiveness of my Mum and Step-Dad because I love them and they love me, and chose to let go of my biological Dad.

I have no idea why some people hold on to the pain of poor parental relationships.  Why anyone would spend their whole lives blaming their parents for how their own lives have turned out.  Yes our childhoods are determined by our parents, but our adult lives are not.  We can choose to let go, forgive (or not) and to move on.  We can talk through our issues with a trained therapist.  We can learn better ways of showing anger and hurt.  We can read books on how to improve our communication and interpersonal skills.  We can learn to do things differently to the generations who have come before us.  By the time we’re 50 we surely have to take responsibility for our own lives and not keep blaming someone else for how we’ve turned out.

“Do the best you can until you know better. Then when you know better, do better.” – Maya Angelou

I fell out with two of my closest friends in recent years and both were holding on to past pain, which I found frustrating.  One had had an eating disorder since her early teens.  She was adopted and had let this dominate her entire adult life.  She never sought help and when her body started packing up from years of malnutrition to be honest I found it hard to have much sympathy.  Her food issues set a bad example for her three children and I couldn’t understand why she hadn’t even tried to sort her shit out.  She herself adopted a child and it’s plain for everyone to see that she never really bonded with him.  She’s a good parent in that he’s looked after very well, but she keeps her emotional distance and is repeating the distant relationship she had with her adoptive Mum.  The other friend also had a strained relationship with her Mum, poor body image, couldn’t come to terms with her chronic illness and the effect this had had on her life, and basically wallowed in the whole thing.  Her constant ‘poor me’ attitude was really grating especially as, compared to me, she’d had a pretty good life!  Why would you not seek counselling and at least make a stab at sorting your issues out?  Why do some people get to their 40s and keep walking on the same old treadmill of pain and misery, focusing on everything they’ve lost and not on all the things they still have?  I can’t image waking up every day and hating myself or my body – how on earth would I face the days?

It seems to me that people who are still wallowing in past pain by the time they’re middle aged are getting something out of it.  You wouldn’t do it otherwise.  We are animals and we don’t embark on behaviour that isn’t rewarding, even if the reward is negative.  I pointed this out in an email I sent to the second friend mentioned above which she made public on Facebook and I was branded an evil witch and sent to Coventry by half my so-called ‘friends’, but I stand by every single word.  We all have baggage.  We all have relationships which have damaged us in some way.  I’ve had my entire adult life taken away through chronic illness as have many of you, yet I am happy.  I have my emotional shit together.  I do not blame my Dad for being crap, or my Mum for her lack of coping skills.  I realized I’d made a mistake in chosing my abusive Husband so I left the creep – I didn’t stay in the marriage torturing myself like my parents have done for the better part of 40 years.  I do not blame my body for letting me down – bless it, it’s doing the best it can to keep me alive despite everything.  I do not have the life I’d planned, but I do have a life and I have no intention of living it in misery.

Happiness is a choice.  No matter what’s gone on before we can wake each day and choose to not let our past define our future.  We can forgive ourselves, and others, for our mistakes and for not being perfect.  I am not one of these happy clappy people who embraces my disability – who the fuck would embrace a broken body?!  But I accept my broken-ness and try to live the best life I can despite it.  If I focused on everything my illnesses have taken from me (career, partner, kids, money, holidays, hobbies) I’d probably top myself, so I don’t focus on it!  It’s not rocket science.

happiness

Weekly roundup

My biological Dad died on Friday following a massive stroke.  My Mum left my Dad when I was 7 and my brother was 9.  My brother stayed living with my Dad in the Midlands, and I moved 200 miles north with my Mum to Cumbria as that’s where she was from.  Telephone calls in those days were horrendously expensive, so I didn’t get to speak to my Dad all that much.  My Mum could drive (my Dad had a motorbike but no car), so we used to shlep down the M6 once a month to visit my Dad and Brother, with me puking from motion sickness by the time we got 20 minutes up the road.  It was not fun.

As time went on we visited less and less.  My Dad punished my Mum for leaving him and was often conveniently out when we arrived, leaving us sitting on the doorstep.  In punishing her, however, he forgot that he was also punishing me.  I’d receive expensive gifts at Christmas and birthdays but as the years went by I didn’t feel I had much of a relationship with my Dad.  He very reluctantly paid child support, which was £7 per week in 1974 and didn’t change until he stopped paying in 1983 by which time it barely kept me in tights.

My Mum remarried when I was 9 and it was my Step-Dad who kept me financially, put a roof over my head, came to my school plays, put up with my teenage tantrums, worried about me, ferried me about, took me on holiday and did all the other things that Dads do.

I got married when I was 21.  My Mum and Step-Dad paid for the wedding, came with me to choose venues, my dress and the rest, and put up with my crying fits when the stress got too much.  I asked my Step-Dad to give me away and sent invitations to my Dad, brother and rest of my paternal family.  My Dad threw a hissy fit, saying I was his daughter and he should be giving me away.  So I let rip.  I’d been living in Cumbria for 14 years by that stage and he had never once been to visit me, despite the fact there is a straight train from his town to mine which takes about 2½ hours.  He could go to Tenerife on holiday but not travel a couple of hours up the M6 to see his only daughter.  I basically told him he’d been a shit Dad and I meant it.  Neither he, my brother nor any of my paternal family have ever spoken to me since.

Five years later when I was 26, desperately ill after catching meningitis, developing severe M.E., unable to speak or walk and having been told I might die, my family heard about a private Clinic which offered an experimental treatment.  We knew a girl very very ill with ME who had been there and she had come home much improved so, absolutely desperate and fearing for my life, my parents decided to take me there.  But it cost £1000 a week, and my parents were struggling to find the cash.  So I wrote to my biological Dad, explained the situation and asked him to help.  His reply was that ME didn’t exist, there were people in the world worse off than me and I needed to pull myself together.  There was no cash, not even a ‘get well soon card’ and he still didn’t come to see me.  As far as I’m concerned he died that day, not this week.

30 years later I still don’t feel I did anything wrong.  My paternal family all blamed me for being the innocent victim in a divorce which wasn’t my fault.  My Dad didn’t make much effort and then basically left me to die.  How I ended up being blamed for all that and being sent to Coventry for the rest of my life is still a bit of a mystery.

So I have to be honest, I feel absolutely nothing about the death of my biological Dad.  I grieved for him 30 years ago and have nothing positive or negative left to feel.  I’m sad for my brother who I’m sure is in bits but these people are basically strangers with whom I share DNA and that has been their choice, not mine.  It is not up to children as young as 7 to make the effort and keep relationships alive in a divorce.  It is up to the parents.  My Mum tried her best and my Dad made it difficult.  All of which was outside of my control.

During the conversation with my Dad over my wedding, he shouted “your my daughter and I love you”.  Love is a verb.  It’s a doing word.  You can’t just say you love someone, you have to show it.  You have to do the work.

On to other news.  Each year my Camera Club has a competition with two other local Camera clubs.  A total of 45 images are judged and I’m delighted to say that this picture I took of my Step-Dad came 2nd 🙂

 

Blood Results

I had to go to the Surgery today to pick up my Famotidine prescription, so while I was at reception I asked if my recent blood results had come back.  They had, so I requested a print-out and there is some great news and some mildly not-as-great news.

The good news:

  • I only have a 1.3% change of having a heart attack or stroke in the next 10 years.  You can do your own QRISK test online here.
  • My inflammatory markers (Serum C reactive protein) are low at <2mg/L (normal is anything under 5mg/L).  Bizarre being as though I have chronic gastritis (an inflammatory stomach disease), MCAD (which causes chronic inflammation) and am permanently injured due to my EDS (injuries cause inflammation).  My C reactive protein levels have always been low, which is great if not a true predictor of what’s actually going on inflammation-wise!
  • Liver normal.
  • Urea and electrolytes normal.
  • Blood sugar is fine.  HbA1c level is 32, which equates to an actual blood sugar level of 5.5% (anything under 48/6.5% is normal).
  • Folate levels are good at 4.7ug/L (anything above 2.5ug/L is normal).
  • B12 levels are good at 378ng/L (normal levels are between 197-771ng/L).  Obviously as a pesco-vegetarian it’s important to monitor B12.
  • Full blood count is normal.

The not as good news:

  • My Vitamin D levels are normal but at the low end of normal.  I live in the northern hemisphere and we’re at the end of winter, so this is to be expected.  I do try to keep my Vit D levels up by eating dairy products daily and getting outside for at least 30 minutes every day of my life with Bertie, but we don’t have much sunshine here in the north of England so it’s easy for Vit D levels to be low.  It’s not something I worry about in any way and I don’t usually feel any worse in winter than I do in summer.
  • I have low iron, which again comes as no surprise and is the reason I went for a blood test in the first place.  My serum ferritin is 18ug/L (normal is 17-291ug/L) and, coupled with my 5 risk factors, I need to see my GP re iron deficiency anaemia.  Sadly I can’t get an appointment with my GP until 22nd March (!) so in the meantime I’ll buy some liquid iron from the supermarket and try that (liquid iron has less iron in it than most of the tablets, so tends not to cause constipation though it does take longer for iron stores to increase).
  • The biggest shock was that my kidney function is lower than it should be for my age at 73 (between the ages of 40 and 59 it should be in the 90s).  A GFR (Glomerular Filtration Rate) of 73 is classed as stage 2 chronic kidney disease, although doesn’t require any treatment.  I would have completely freaked out when I read this if my best mate, who is 8 years younger than me, hadn’t had the exact same result recently.  Her GP said it was nothing to worry about, though you do wonder why we both have reduced kidney function!  My Mum has a GFR of 45 but her GP isn’t bothered and says no treatment is needed, so it seems unless your GFR is 1/3 of normal it’s not something to be concerned about?!

In a way I’m glad my iron has come back low because it explains the symptoms I’ve been having for the past few months and hopefully I can do something about it (makes a change!).  Having been pesco-vegetarian for nearly 30 years this is the first time my ferritin levels have ever been below normal, so it just shows the impact a reduced diet or taking certain medications can have and also the extra burdens placed on our bodies during Menopause.

Anaemia

I’ve been feeling really washed out the past couple of months and my get up and go has got up and gone.  Both ME and EDS cause “fatigue” but I’ve had both for so long that I know what that exhaustion feels like and my current waffy-ness feels different.  I’ve also been dizzy……a lot.  I do suffer from dizziness as part of my existing conditions, but only for the odd day now and then and it’s usually so severe I can’t get out of bed.  My current dizziness is milder but ever present and each time I turn my head the world tilts slightly on its axis.  Plus I’m not sleeping.  I’ve had insomnia for over 2 decades but again this feels different and I just have a niggle that “summat’s up”.

Of course I am peri-menopausal and fatigue, dizziness and insomnia are simply part of the bag for many women.  But then so is anaemia especially if your periods are heavy, and mine are definitely heavier than they used to be.  There are various types of anaemia, but in menstruating women iron deficiency anaemia is the most common so I made an appointment to see the nurse today to get my bloods checked.

I have just about every risk factor for anaemia going:

1.   Peri-menopause/Menopause

Any menstruating woman can be at risk from anaemia, particularly if she has heavy periods.

2.   Endometriosis

I’m not just bleeding from my uterus every month, I’m also bleeding into my pelvic cavity because I have endometriosis.

3. MCAS

Anaemia is the most common issue affecting red blood cells in MCAS patients.  See Lisa’s excellent post written on this issue over at Mastattack.org

4. Gastritis

Any type of inflammatory stomach or intestinal disorder can cause anaemia, eg. gastritis, ulcers, diverticulitis, crohn’s disease, colitis, coeliac disease, GERD (ie acid reflux).

5. Drugs used to treat GERD

PPIs, H2 blockers and antacids can all interfere with iron absorption and I have been swigging Gaviscon and Rennies recently like they’re going out of fashion on top of taking an H2 antihistamine.

4. Diet

I’ve been pesco-vegetarian for nearly 30 years.  Before getting Histamine Intolerance I was very careful to eat a wide range of high iron vegetarian foods but since getting HIT and having to eat low histamine I’ve had to remove many of these from my diet, eg. spinach, soya beans, kidney beans, dried fruit, cashew nuts.

Diet deserves special mention.  People with ME, EDS, HIT and/or mast cell diseases are often on restricted diets of one kind or another.  Here in the UK we hardly ever get to see a Dietician, so are left to try and work out our food issues alone.  We often don’t have the skills or knowledge to decide if we’re eating enough of the right foods to give us all the vitamins and minerals we need, so it’s really important to have our bloods checked once a year just to make sure we’re not deficient (I was shocked to learn today that I hadn’t had a full blood work up since 2014 despite all the various issues I’ve had in the past year or two!).

I won’t get my results back until early next week, so I’ll keep you posted.  For those of a religious disposition please pray I’m not anaemic and don’t need iron tablets.  My poop is the only thing in my entire digestive tract which is currently normal so the last thing I need is to not be able to go-potty for days on end! 😉

Weekly roundup

Hurrahhhh!!  I tried some Famotidine (H2 antihistamine) for my horrendous GERD and I am tolerating it OK 🙂  The agonizing pain in my acid-eaten stomach is slowly receding and my cough has totally gone (I still have pain in other parts of my abdomen but that’s from separate issues).  You have no idea the relief.  I know that eventually my mast cells will reject the drug (I tolerated Zantac/cimetidine for over a year before my body revolted) but for now I’m just enjoying having a break from the torture.

I decided I no longer need to see my Counsellor.  The anger I’ve felt towards my Mum and her alcoholism for the past few years no longer threatens to overwhelm me and I feel more like I’m swimming again rather than drowning.  The situation hasn’t altered, but in talking it through I hope my response to it has.

I was pissed to see the Low Histamine Chef’s transcript to a recent podcast with Abel James say that meditation can help Chronic Fatigue Syndrome.   Firstly, where are her medical qualifications and secondly she does not have M.E. and I resent hugely her talking about a disease she clearly has no knowledge of.  I’m sure meditation is helpful in calming the mind and helping with stress whether you’re healthy or sick, but for her to talk about it helping specific diseases is reckless.  I was bedridden with M.E. for nearly 10 years.  I was unable to open my eyelids, chew solid food or speak for some of that time.  I spent virtually every waking moment in my head because I could barely physically move.  Trust me when I say meditation did not help any of my symptoms.  In fact I tried gentle yoga breathing, in through the nose and out through the mouth, for 10 minutes a day for two weeks and ended up so ill I was in the Neurological Rehab Unit of my local hospital for nearly a month.  You also cannot cure M.E. by anything you eat and if you do you did not have M.E. to start with. Don’t forget that many health gurus online, most of whom possess no medical qualifications and are not registered dieticians, make a shed load of money from telling people how to treat incurable diseases through diet and we believe them because we’re desperate.

The post office have buggered up my entire weekend.  I want to decorate my hall.  Everything is ready and I’d arranged for a friend to come and roller the walls this weekend while I did the skirtings.  The paint I needed was out of stock at my local B&Q so I had to order it online, paying for it to be delivered on Friday.  I waited all day as deliveries can be any time from 8am to 6pm but when it hadn’t arrived by 5.30pm I decided to ring B&Q to check it was coming.  According to their records, the post office had attempted delivery at 10.30am that morning but I hadn’t been in and they had taken it back to the depot.  I was livid.  No-one had been to my house and even if they had and I just hadn’t heard them (not likely when you own a dog who barks like a lunatic at anyone who dares to open our garden gate) no card had been put through my door.  B&Q tried ringing Parcelforce to redeliver on Saturday only of course they were closed, so my plans are totally scuppered.  Everything out of the hall is in the lounge, and there is masking tape all over the hall floor, which means my cleaner won’t be able to do her job on Wednesday (the whole point of doing the decorating this weekend was that it would be finished by Weds!).  I know it’s not the end of the world, but when you’re ill and have very limited energy doing something like decorating a room is a huge undertaking, which you only barely cope with if everything goes right.  So when it goes wrong it all just seems too much.

From comments on my last blog post it appears my American friends need a dictionary in order to understand the way I ‘speak’, even though it’s English (there is no such thing as American English, there is just English which you lot in the States have butchered! 😉 )  I suspect most Americans think that all English people speak like the Queen, or Julie Andrews in Mary Poppins, not realizing that accent died out in the 1950s.  The next dialect recognized by Americans is Cockney however this is only spoken in some parts of London and not by 90% of the rest of the country.  Like America, where Texans speak differently to New Yorkers, England has hundreds of regional accents and dialects and massive variations between the North and the South – you can listen to some of the regional variations here (only listen to the first few minutes, after that he wanders off all over the world).  Cumbrian is a mix of old Celtic and old Nordic (we were invaded by the Scots, the Romans and the Vikings, who all settled here) and very traditional Cumbrian actually doesn’t sound like English at all (listen to this clip the speech starts at 20 seconds and this clip)  Now aren’t you grateful I don’t type in my local dialect? 😉   We even traditionally have our own counting system, you can have a listen here.  Apart from Farmers, however, most Cumbrians speak with a more modern dialect you’ll be pleased to hear, even though young people pepper the end of every sentence with…….like, eh!

For anyone who doesn’t know where Cumbria is, below is a map of the British Isles.  We are the 2nd largest County in England, though one of the most sparsely populated.  We are the last county in the North West before Scotland and lie approx 100 miles north of Manchester and 300 miles north of London.

Tootsie Trouble

For 4 months now my feet, hips, pelvis and lower back have been dreadful.  I’ve had niggly ball of foot pain before but nothing like this – trust me when I say it’s sodding agonizing to walk when the soles of your feet hurt!  My hip sockets have also been painful….again.  In 2014 I was diagnosed with Greater Trochanteric pain syndrome (I seem to collect syndromes like other people collect rare china!) and spent 9 months on crutches ‘resting’.  It showed up again in the Autumn of 2016 like an unwanted ex and my crutches came out of storage.  Last time my right hip/leg was the most sore and this time it’s been my left (my pain likes to move around just in case I get bored). My SI joint is also playing up after being really good for a couple of years now.

I had no idea what had set my lower body off and when you don’t know the cause of something it makes it hard to cure.  I instinctively knew, however, that my feet were the cause of my hip, pelvic and SI pain so I tried 4 different kind of shoe insoles to see if they would help.  This is on top of the half a dozen I’ve tried over the years from my Podiatrist, including custom made moulded insoles which actually made my feet worse, WTF?!  In desperation, in December I spent £80 I didn’t have on some G8 insoles, which are used by cyclists.  They come with customizable arch supports with 5 different heights which you can move around – an ingenious idea.  They felt great but sadly didn’t help my foot pain.  I even tried metatarsal pads, which were seriously uncomfortable and didn’t help either.

The only thing that had changed in the Autumn of 2016 was that I’d bought myself some posh new wellies.  The Lake District is renowned for its rainfall and I live in wellingtons about 10 months of the year.  For the past few years I’ve had Dunlop Blizzard, which are really comfy and snuggly warm due to their fur lining, but they only last a couple of years before they either split or the lining disintegrates.  So this time I went for some stupidly expensive Muck Boots.   They are the warmest wellies I’ve ever owned, look trendy, are totally waterproof (as against water resistant as cheaper neoprene wellies tend to be) and even with my 4 degree insoles in felt really comfy, if slightly snug on my right foot.  I also thought that, being more fitted on the leg, they would be more supportive for my ankles which did tend to flop around in my previous wellies.  I loved my Muck Boots but it turned out the feeling wasn’t mutual.

As my wellies were the only thing I’d recently changed, I went back to my old Dunlop Blizzards just to see if made any difference and to my absolute amazement within a few days my feet were less painful.  I’ve now been back in my Dunlops for 3 weeks and both my foot and hip pain are 70% improved (my SI joint is still niggling away but you can’t have everything in life!).  I’m gobsmacked that the Muck Boots, which felt totally fine, have caused such havoc.

Regular wellies, like my Dunlops, have wide feet in which your tootsies tend to slop around a bit.  I have slightly wide feet (size D) when they’re measured and have to accommodate my insoles, so do need plenty of room in my footwear.  Muck Boots are tight fitting on the leg and, unlike regular wellies, are also narrow in the feet fitting more like shoes.   Although they felt comfy enough I think that when I walk my stretchy foot ligaments cause my feet to splay out considerably and there simply wasn’t enough room for that in the Mucks.  Like my Podiatrist said, 1 or 2mm makes a massive difference to people with EDS where it wouldn’t bother the rest of the population.

I now have a £90 pair of brand new size 4 (EU 37) Muck Boots and an £80 pair of size 4 G8 insoles for sale if anybody fancies them!

Weekly roundup

I won’t lie, this week has been physically tough.  For two days I literally couldn’t stand upright for the pain in my abdomen, which turned out to mostly be down to the fact I was ovulating (early).  Due to my endometriosis, ovulation has become almost as painful as menstruation so now instead of being tortured once a month, I’m tortured twice.  Yay.

The huge surge in hormones associated with ovulation and menstruation play havoc with both my MCAD and my EDS.  I already have a hiatus hernia which becomes even more slack at these times, allowing acid from my stomach back up into my esophagus totally unchecked.  Histamine and other mast cell mediators respond to the rise in hormones, particularly in my stomach, increasing acid production which, added to the slack sphincter, causes reflux hell.

Add to this a lack of sleep and the emotional impact of huge surges in hormones and it leads to weepiness, grumpiness, anger and generally feeling shite.  I swear if there is re-incarnation I am refusing to ever come back to this plane as a girl.

I had another good session with my counsellor on Tuesday.  She is helping me understand why  my Mum is using alcohol to push me away and knowing the reasons behind that does help me be less angry at her (some of the time!).  In fact, the last few sessions have been so enlightening and helpful I’m not sure I need to keep going for therapy – I’ll make a decision about that next week.

Wednesday night was a competition night and I played a blinder.  We are allowed to enter 3 photos per competition and mine got 3rd, 2nd and 1st place!  It doesn’t get much better than that.  I’ve also been working on another weird image I’m calling ‘At One With Nature’ which I’ve entered into the next competition.  It’s sooo much fun dressing up, although I did get some very strange looks off the Postman when I answered the door to him looking like Morticia Addams 😉  The £8 wig off Ebay also shed like a mangy dog and I’m still finding 2 foot long hairs all over the house:

My dog walker’s daughter was poorly for 2 days this week which meant she couldn’t walk Bertie.  Why do these things happen when a) my scooter was away being fixed and b) I was having such a horrendous week I could barely stand??!  I just had to grit my teeth and walk the furry child myself, which was no fun in the world.  My scooter came back on Thursday and is so far OK, but it’s been OK before only to conk out again – time will tell if it’s actually fixed or not.

Today I’m driving the 45 minutes through to my best mate’s house to spend the afternoon with her.  It’s tiring and makes for a long day especially when I’m feeling rubbish, but at the same time it’s really nice to get away from the house which I rarely do.  I have to take Bertie out first though, then drop him off at my parents’ house for the day, so I’d better get my lazy arse out of bed and get cracking!