The unwelcome visitor.

Today I have a visitor.

She hasn’t visited for a while.

The hours tick by and she gets harder to ignore.

She creeps inside and makes herself comfortable.

I notice her, she catches me off guard.

My chest fills, fills with her bitterness,

She swells to fill the cavity Behind my ribs, it becomes difficult to breathe.

I pace, still there, I distract myself, still lurking.

I don’t like the days she visits.

She doesn’t care that everything is going well.

They don’t get better, only the sleep will bring solice.

My body becomes my conflict.

The sleep will be difficult, she will taunt me until the early hours.

Hopefully I will sleep.

Hopefully she will leave.

At least hopefully for a while.

Signing off with love and lipstick

Pip 💋🖤💄

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A rediagnosis has given me my life back.

A rediagnosis has given me my life back.

I can finally share the joy that is my re diagnosis for the ongoing medical issues I have had over the past 15 years.  I have spent almost half of my life in chronic pain, being sent from gastroenterologists to gynaecologists and back more times than I care to remember been subjected to every test I can think of to try and pin down what is wrong with me.  

I tried to get my repeat pescription for my tramadol only to be refused by my new gp, let’s just say I was less than impressed.  I was given a pescription for indigestion (a hernia was found during my last endoscopy) but this is something I barely suffer with so in a huff I told the doctor she could keep her medication and that I wanted another appointment to investigate this problem.

My younger sister is a sister at the RVI hospital in Newcastle so I asked her to accompany me for reassurance and help with getting the seriousness of my condition over to a woman I felt was not taking me seriously.

Anyway, i sat down in the same chair in the same surgery I have been going to for over 5 years since I moved into the area.  I was waiting for it and the doctor didn’t fail ‘what are your symptoms’ my whole person automatically went on the defensive.  I have fought to have my case heard so many times, I wish I had a pound for every time I have said the words vomiting, nausea and chronic lower abdominal pain I would be a very rich girl!  

So I explained the symptoms again, while she typed it into her computer and out of the corner of my eye I could see my sisters head shaking and eyes rolling, she backed up my every word and made it crystal clear the direction my life was heading if nothing was done.  

It just so happened that my sister mentioned that people can physically see when I ‘get my pains’, that all colour instantly drains from my face (like I’m not pale enough!) and something changed in the doctors demeanour.  She started on her computer and explained that she thinks she knows what it could be.

She has diagnosed me as having abdominal migraines.  After reading up on it, I tick every box of symptoms

  • Severe Stomach pain that isn’t in one specific spot (non-localized pain)
  • Nausea
  • Vomiting
  • Loss of appetite (not as much now as when it all started when I dropped over 5 stone in a matter of months)
  • General malaise, overall discomfort, uneasiness
  • Often there is no head pain, just the stomach discomfort and pain
  • Symptoms completely go away between episodes.
  • Lack of energy.
  • Pain that lasts 3-72 hours.

Abdominal migraine was overlooked as it is so rare in adults.  Approximately 2% of children suffer from and much, much fewer adults.  It is often mistaken as IBD, IBS or lactose intolerance.

There are many triggers that lead to an attack such as

  • Stress.  Both positive and negative stresses can lead to a flare up.  I stress a lot and I have always noticed that this is a massive trigger with me.
  • Changes in sleeping patterns.
  • Fasting or skipping meals. 
  • Excercise (at least I am safe from this one)
  • Certain foods have been identified as triggers.  Chocolate, cheese, Citrus fruits, alcohol and foods containing MSG and preserved meats such as hotdogs or sausages.

I can’t tell you the relief I feel at having what feels like the Perfect diagnosis.  I have spent my life feeling like my many diagnosis didn’t quite fit but this one really feels like it fits.  When I came out of the doctors I felt like I had my life back.

I have been given medication.  My medication is what given to treat regular migraines.  I have to take 2 as soon as I feel an attack coming on. I have had what I feel would have been 2 attacks and the symptoms all but disappeared within 30 minutes of taking the tablets so fingers crossed this is the answer I have been waiting 15 years for.  

I feel like I can plan things which for me has always been difficult as I never know when I will be ill or how bad it will make me.  I can see a future which for me is such relief in itself.

I hope my ongoing battle and this blog has been an insight into what it is like being me and as this is such a rare diagnosis I hope maybe someone out there who’s been potentially misdiagnosed can read this and take it further.  Your illness isn’t always as it seems never give up the fight, you are stronger than you realise.

Signing off with love and lipstick,

Pip 💋🖤💄

Am I losing my mind?

Am I losing my mind?

Today’s blog is about something that scares me about myself more than anything and that’s my memory loss.  My memory has been noticeably decreasing in its capabilities for about the last 10 years and the last few years its has increasingly becoming something I’m aware of.  I have mentioned it in passing to my loved ones but never really in any depth, I tend to bury my head in the sand when it comes to serious matters so not to trigger my anxiety but this might bring me to the next step in the knowledge on what’s happpening to me.

I know people say ‘oh I can’t remember that long ago’ but my memory loss is becoming a cause for concern.  I cannot hold onto memories, non important and important details of life.  It’s a scary place to be and if I’m honest I’m petrified as I know it’s not just ‘normal’ memory loss. 

Small examples of some of the things I mean.

  • I cannot remember what has happened in a movie I have watched within a couple of hours of watching it.
  • I have no recollection of going to events that I apparently have attended (e.g. Ricky Gervais stand up with my sister, totally zero memory it ever happened and I love him so I wish I remembered)
  • People ask me about pivotal things that have happened in my daughters life and I have no idea, I don’t recall at all her first crawl, words, birthdays and christmases.
  • I don’t know what movies I have seen, books I have read as I remember only a couple (e.g. I know my favourite book is George orwells 1984 and I know I have read it multiple times as I read one copy to tatters and had repurchase yet I cannot recollect what happens in it, I remember a couple of small details but other than that it’s like I have never read it)
  • I ask the same question multiple times without realising it (is it Monday today?) and I only become aware when I am told.

If I have memories they are like snapshots.  I said to alex when we got married that I was so glad we had a videographer and a photographer for our wedding and we joked that I wouldn’t remember it but I know In my heart I won’t remember 99% by the time my first anniversary comes around in November as it’s already slipping away.

I’m scared to talk about it, I’m scared that I sound like I am being dramatic, as if it’s going to sound stupid when it comes out of mouth.  I’m scared I’m losing my mind but To a degree that I feel this is not normal. 

I am in a really strange place where I don’t know what are my actual memories from what I am appropriating from photographs I have seen.   I tend to see my memories as still images, It’s now very rare that I have moving memories of pretty much anything.  It’s so difficult to explain.  

The most painful part is that I don’t remember anything about a lot of people from my past.  I know names and faces and I obviously know we are friends but I have no memories of interacting with them to the point that we gained that relationship and that really upsets me.

I have tried googling my symptoms but that just leads given a slippery path of guess work, uncertainty and probably thinking the worst so I stopped pretty early on.  However due to my lack of faith in my doctor I feel uneasy sharing this with her as I am already in a complicated relationship of mistrust so where do I go from here?  

I would appreciate anyone’s advice or even just a shared story.  They say the first step is the hardest so I hope by getting this out into the world that this is my first step to a more positive and less frightening future.  

I cannot thank you all enough for listening to me rant on about my useless brain function.  Thank you all for sticking by me.  Personally to my husband Alex, thank you for answering my questions regardless of how many times that day I have repeated it with no judgment, no calling me out and with unparalleled love in your heart.  I asked him a few days ago what he would do if I lost my memory and his answer was so honest and without a seconds hesitation was to ‘love you regardless’,  with support like that my life journey is one I cherish regardless of what may come.

Signing off with love and lipstick,

Pip 💋🖤💄

My frustrating doctors appointment.

My frustrating doctors appointment.

As you may know if you have read my previous blog about suffering with a chronic illness. I am a IBD sufferer. My main personal symptoms are chronic abdominal pain, vomiting and headaches.  I have been on this journey for 15 years and have tried everything. I have been to see consultants, private and NHS, passed from gastroenterology to gynocologists, hypnotherapy, endured every kind of invasive investigative procedure possible and as for medicines I have tried EVERYTHING, no regular anti spasmodic medicines work for me.  I have a high pain threshold but also a high tolerance for medicines so nothing really makes any difference so now it’s a case of managing the pain and for that I am prescribed tramadol and that I only take when I nothing else helps as that too has little effect.

I am currently on my last strip of tramadol and with stress causing a massive IBD and eczema flare up I booked a appointment at my doctor (which in itself took over a week).  Every time I go to my surgery (which I have been at for 5 years and from birth at the one previous) I am seen by a different doctor which would be fine but I am always met with the same blank stares and I have to start my 15 year story from the beginning.

Anyway to the point, I sat down and started explaining that I needed some betnovate for my eczema (a steroid cream that’s the only thing that helps) she started analysing everything I have done up to this point, all of which were wrong (in her eyes!!) and then looked at me and said ‘when did it start we have no records of it?’ Which drives me crazy as I have had it since I was a toddler and I spent most of my teen years hospitalised or in bandages so how can there be no records.  She finally backed down and ‘allowed’  me my cream but also 4 other less potent one she wants me to use.  To add insult to injury she asked me if I wanted a leaflet about living with eczema, errrrmmmmmm NO! 

So I knew by this point she was being a super doctor.  Don’t get me wrong I understand doctors cannot prescribe unknowingly but the prescription for tramadol is a repeat prescription from my previous doctor.  To clear this up I could understand if I had been for a prescription a month or two ago but my last box was given to me in 2015 as I only take them as a last measure.   Like the eczema conversation she said she could see no files to back up my illness which by this point had my anxiety levels peaked.  I explained that I have been sent to many consultants by previous doctors Both at this surgery and my previous doctors so that’s impossible! After some tapping on her computer she relented and  said she could see some letters  from the consultant but she couldn’t give me a pescription as it’s not ‘protocol’and she had to follow the ‘correct pathways’.  So she told me to come back the following day so she could read my letters and make her mind up as to where we go next.  I went back today to be told she was waiting for correspondence from my consultant.  

I was furious and above everything totally frustrated.  I have spent 15 years being poked and prodded and I have followed every piece of advice and taken everything as prescribed and now I feel like I am being questioned as if I use them for some other use.  I was made to feel like a child making my illness up (which as most chronic pain sufferers will understand is one the biggest struggles we endure living with an invisible illness).  Now I have the most awful feeling she will not prescribe me only relief medication and instead try giving me something else and starting investigating again, a total disheartening step back and a waste of time and money.

 I was walking back from the surgery by myself and everything was racing through my mind. 

  •  How can I live with this pain?
  • How can I be in this position again?
  •  What do I do if I have to live in agony without any pain relief? 
  • What about me makes my case so hard to understand?

 The basic answers to the above is I cannot live like this, there is no quality of  life if I have live like this.  This is the whole reason I agreed to go for my last set of investigations, of which pain relief at the time through pescribed drugs were the agreed outcome.

So here I am until next week waiting for the doctor to decide my future, I’m so angry that a women who knows nothing about me or how my illness affects me personally is able to come in and just stop the only thing that makes the physical side of life barable. 

I shall update when I know more and hopefully it’s the answer I need and I’m back to the grind of managing the illness rather than whatever she would want me to endure next, so keep your fingers crossed that she trusts me and hears what she needs to just give me my medication.

Signing off with love and lipstick,

Pip 💋🖤💄