Tag Archives: family

Cognac & Cigars

So I haven’t actually written much since I started my blog many moons ago due to the stresses of life and the joy of dealing with chronic pain and fatigue.

I sit staring at the screen wondering how I can tell people what living with chronic pain is like but it’s impossible to explain to anyone who hasn’t gone through it themselves.  I know certain people in my life including some family members think that I enjoy sitting at home watching day time TV with my feet up using the excuse of pain as to why I don’t work, although I am allowed some dispensation as I also care for my son!

In fact it has been banded about that I like to sit on my arse drinking Cognac, smoking on a fat Cuban, watching the delights of day time TV, whilst they flog their guts out at work paying for me to do just that!   I personally don’t see what’s wrong with that myself, I just wish it was true and that I had the sort of money to afford to do it but fair play to the people that do and can!                                                                                                                                        They just don’t get it but then they wouldn’t because, and this is my mantra, they don’t get it unless they have lived it, and as they haven’t then they won’t understand.                           I actually had my brother-in-law tell me one day, over a few to many cocktails,  how much he wishes he had my life.  I nearly fell on the floor but instead burst into tears and told him, if he really knew what my life was like he wouldn’t be wishing he could live it and that it was me wishing I had the life he and my brother does, with no money worries, a fantastic job that takes him all over the world,  no ill health or a ill child to support and look after and no real support to help me!!!   He just couldn’t see it, even after I pointed out about my pain my illness causes, the depression, the overwhelming anxiety and fear coping as a single mum and with a child with special needs and twins at that, but he insisted he would and that was nothing compared to his stressful life!

I think my last words to him, as I stumbled to the toilet trying not to cry with sheer frustration, were “If only you could live a week in my shoes then we’ll see if you’d still want to be me!”  The subject was rapidly changed when I reappeared and funnily the Cognac came out, but you get my point about people not understanding what it’s like to life with chronic pain and a child with Special Needs, they think we have it easy compared to someone who is working!

I did have a good snigger recently though, as he and my brother had my boys stay for several days, they normally only have his brother,  and  boy did they struggled dealing with 2 grumpy teenage boys, getting them up early in the mornings, special diets, meltdowns and a child that is totally random and struggles with everyday life they so take for granted!  Welcome to a world of Autism  and Special Needs boys, still want to be me?  Hahahaha

Lets just say I think they finally realised it’s not so easy when it comes to a child that has different needs, that maybe I wasn’t exaggerating about my son’s needs and isn’t as easy to deal with, as it probably is when they have his “normal” brother to stay!

I always live in hope though, I suppose that’s what keeps me slightly sane!

Ta ta for now x







Stop the ride I wanna get off!

I’m not quite sure where to begin as the weeks just seem to be racing by and so much has happened, what with a family wedding, my son fitted with a block brace and being nothing but ill since he has had it, an x-ray to discover he has scoliosis, a blood test and a part in the school play!

So first things first, I think I  left you last with the blood test saga, which ended up with my mother and I having to half carry, half drag my son into the room, with me holding him down in the chair whilst sat on my lap!!  Luckily I did have the foresight to go in and warn them that at some point I may have to become angry and shout at him loudly to get him to calm down as sometimes it’s the only way to get through to him, as his fear just blocks out everything else.  The problem is when I have to do that in the past,  I then got treated as an uncaring, nasty mum, who obviously has no compassion for her son.  Although now they know me, so i don’t get the “LOOK” but if i’ts a new nurse I do have to pre-warn them, so my son isn’t, discreetly, slipped the number to Child Line when we come out!

They then decided to tell me that as he’s 13 they want him to go over to the adult phlebotomy unit for future tests. I laughed hysterically, before sobbing and clinging desperately to the staff nurses arm, “You cannot be serious?  Did you not just witness what happened back there?”

Well can you imagine the scene?  A room full of adults waiting for a blood test when suddenly they see a screaming child being dragged into a cubicle by a stressed out mother.  Next minute all they hear is his mother shouting at her child to stop screaming and calm down etc. etc. (I’m sure you get the jist of what I would be saying)!  With screaming child telling mum to get off him and leave him alone!  Mum shouting “just do it, I’ve got him held down” to the nurse while child sobs hysterically!

You can imagine the reaction when we stepped out the cubicle.  No doubt I would be lynched the minute I came out, held face down on the floor, whilst receiving a few swift kicks in the ribs, till the police and child protection arrived to escort this heartless cow of a mother away, while whispers of poor child, how callous reverberated around the room!!                   Just the thought of this sends shudders of fear down my spine and sweat pop out of places it shouldn’t!  So for the sake of my sanity and my sons, I took action.

I mean I probably shouldn’t of called the Staff Nurse a liar and a callous cow or sarcastically thanked the receptionist for being soooo unhelpful, or  sneaked behind their backs to complain to his Specialist Nurse, who is an absolute angel by the way, to get  her to sanction that he could continue to visit the children’s department for his tests! But hey, all’s fair in love and war and never cross a stressed out, tired mum, YOU WILL NEVER WIN!

A small victory, I know, but one none the less, in the constant world of hospital battles.  Also another plus is my  nightmares have finally stopped, of me being lead away, put in stocks and pelted with rotten fruit for being a bad mother, by hysterical laughing nurses and patients!  Believe me that’s a  tame one, the others involved zombie nurses and extremely large syringes!

So we got past that challenge to find out he needs another test as his potassium level is .1 below what it should be.  Seriously?  Are they trying to put me in an early grave? I’m sure  a .1 difference isn’t going to cause major issues in his health that requires them to issue another blood test!  Do they not see the crazed looked in my eyes or my hair that’s turning greyer and greyer?   So for the sake of my sanity I took the decision not to take him. Well I say I took the decision, I did talk to several friends and family members for their advice, to ease my guilt,  and they all agreed for .1 that is really wasn’t worth putting him through all that fear again or adding anymore grey hairs to my head!

I just feel like some days I am constantly banging my head against a brink wall with people who wont listen to me and think its OK to treat my son like they would a child without special needs, without  understanding the extra stress this puts on parents and the guilt it can cause, as you start to question if you are actually a good parent or just an over anxious parent that they seem to like to imply!

Anyway moving on, we have had some good news though, so it is possible!   We have reapplied for a School Statement and got through to the statuary assessment stage this time! This is a massive achievement as its taken over 4 years to get this far!  So I met the Ed Psych yesterday to go through my concerns regarding my son and the school.                          But oh my goodness, she looked like a child herself!  When she walked in I thought she was a sixth former till I realised the school didn’t have a sixth form!!                                        Although to be fair, to her, she was very nice and very positive so between me and the school, we have a very large amount of fingers and toes crossed that he gets accepted.  We have about a 2 month wait to find out but will keep you posted.

The next week will hopefully be slightly less stressed, as I am in hospital tomorrow for pain relief injections in my back.  I hate hospitals, despite the fact i practically live in them, but this is for me so today I have a major headache and quiet panic attacks about the ensuing procedure!  I say quiet as I can hardly freak out when I am trying to convince my son there is nothing to worry about when going into hospital!  You would think, after 26 operations, that I have managed to master by fear and see it as just another day out but surrounded by Dr’s and nurses and large needles!  But no I’m still a wimp and feel slightly hypercritical when telling my son off for throwing a fit about his own procedures!     Gosh, being a grown up sucks at times, that’s why I think I still act like the biggest kid going. Although it’s fun when you embarrass your kids by acting like a bigger kid than them and get me and my mother together and I’m even worse! But  I digress!  So yes, hospital tomorrow a few days of me being looked after for a change, then a week of hospital appointments this time for my other son!  Will it ever end, I wonder?

My Life is like a constant Merry Go Round and I do enjoy it, but sometimes, just sometimes I just wanna stop the ride, get off, and just my catch my breath for a few minutes!





The first hesitant steps into the world of blogging!

Well here I am at the ripe old age of, nearly, 43 and writing my first blog. I am questioning why I am opening myself to the world of blogging and have came to the conclusion that I needed to give my brain a break from my crazy world and let this social world take the hit instead!

You see life isn’t simple, but then again whose is? But mine seems to be extra crazy when trying to bring up twins, one with special needs , coping with my own crippling illness and being a single parent. I’d like to say I have lots of support but unfortunately I don’t  as my parents live abroad and the boys father, well the less I say there the better but I will  just say that he won’t be winning an award for Best Dad or Most Understanding Dad anytime soon, but he’s definitely a good Dad or so his mum keeps telling me!

So back to my crazy world, lets start with last Monday. It started off well enough, until I had to take my youngest son for a blood test, I say youngest he is actually a twin but was born 10 mins after his brother and believe me that makes a big difference in their world, or so they tell me.

Now I hear you say well whats crazy about that? Well you see for me, when my son has a blood test it actually turns into something like a war zone, with tears, tantrums, anger and fear, and that’s just me!

No I am joking, its my son, who has an abject fear of needles and anything connected to hospitals, you see my son has complex medical problems and spends his life flitting from one hospital, physio and occupational therapy appointment to another, that’s also not counting counselling and other places we have to go to!

You see, In his short life, he’s only 13, he has had over 10 procedures already and is currently fed through a tube into his stomach, at night to help keep his weight stable.  He is allergic to most foods and doesn’t absorb the nutrients he needs to thrive and as he cant eat much he needs the boost of the Enteral feeds he gets at night. He also has other complexities surrounding these issues so hence all the other appointments. Oh and they haven’t diagnosed him yet, they just class it as Allergic Gut Reaction, basically they haven’t a clue why he has all these problems. I think I do but as I’m only his mum my opinion doesn’t count apparently! But we will see as I’m on a mission to prove them wrong!! So watch this space!

So a little introduction, for you, to the craziness that is our world, between now and June, between the 3 of us, my other son is now showing similar signs, I have 15 appointments to attend with one thing or another. Since Jan this year I think I have had at least another 20 that I’ve attended for either me or my son. So life is a tad busy!

I mean, tell me, is it bad that you are on first name terms with not just the cleaners at the hospital, but the porters and Admin staff! There was talk of dedicating a parking space just for us, as we are there so much, but there was some sort of objection from the CEO of the hospital, something to do with it being his personal parking space or something? I don’t quite understand his objections, with the money he’s on he can afford to park in the car park, unlike us minions! Its cost me £10 this week to park for 3 appointments, no wonder people call ambulances at least then you don’t have to take a loan out just park for a few hours, you just get dropped off and wrapped in a blanket while you wile away the hours waiting to be treated!!

Anyway I digress, so this is part reason why I thought I’d start a blog because half the time I don’t actually, quite believe how hectic my life is and I’m sure my family and friends don’t believe it either and just maybe, there are other parents out there feeling just as over whelmed, frustrated and tired of living in a world of uncertainty, illness and lack of understanding of what life is like as a parent of a Special Needs child!

So I will try and share my hectic life with this social world and maybe this will help get my chaotic life in to some sort of order and make me realise I’m actually not alone in this world of illness that having a Special Needs child brings!

Oh have i mentioned yet that I am also ill and currently fighting consultants for a diagnosis along with my son? No? Well that’s for another day, I can’t give everything away in my first post as I hoping you’ll come back!