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Portugal Holiday – the ups and downs


Hi guys I hope everyone’s doing well. I havent the in the blog-post in quite while, but I really wanted to share some things with you.. some super great and some pretty crappy..I’m writing this from Portugal I’m on holiday with my husband and children as well as my parents and my dad’s mum, my nannan, so the kids great nannan.

This holiday is only been possible thanks to my parents generosity, to say we are grateful is the biggest understatement I don’t even know how to put that into words but we are having the best time.

Before we left…

If you have medical needs, like me there is quite a lot to be organised before you go away, for example your medication you need to make sure you have enough of everything and a medical letter to confirm you are prescribed them, especially important if you have stronger medications as some in countrys it may be a banned substance. (I think Turkey has a ban Codeine banned for example).

I’m very lucky that I have a awesome medical team at my doctors surgery, and a wonderful GP who helped me prepare for my holiday.

So we had 7 day holiday booked so I needed 7 days worth of all my meds, but my doctor said it was sensible/ advisable to take an additional 7 days just in case of delays or other problems. (Similar advice can be found on the Pinnt website too.) That in itself could be quite a lot to organize for most, but if you have liquid medications then the physical size and weight of them makes it difficult. G was great and helped me work out how much we needed of each medication for example

Senna I take that twice a day 20ml each time.

So…. 20ml x 7 = 140ml PLUS 140ml = 280ml

We did this for all of my medications and gave the numbers to my doctor who wrote a fantastic letter explaining everything, including dosges etc and very importantly that I would need to keep all of the medications on my person at all times. This is for a few reasons, firstly if I have it, it cannot end up lost luggage, or stolen. Secondly incase I need to take any meds especially if there is a delay, you may have seen the on the news the guy who had Parkinson’s and was delayed without medication LINK here .  

As My two of my medications control drugs one of them is sort of in that category (pregabalin), nothing we cant handle though.

Then we have my nutritional supplies this is for me ensure compact, flexitainers (empty bottles for pump), the tubing known as giving sets) and syringes. Again we did the maths and my GP added this to my letter. This didnt need to be kept with me but would most definitely use up my baggage allowance cause it weighed 17kg. So I spoke to TUI who added additional baggage for me …I will do a video on how to arrange this and special assistance at airports etc.

We arrived in Portugal and wow it is beautiful and the Villa is amazing once we found it..lol a we went the scenic route

Mom and Dad have been great, from making sure there was a downstairs bedroom to making sure beaches are accessible to somebody on crutches, plus finding shade from the sun as it has been an excessive 35° here most days so it’s been bloody hot. To help me cope with this I’ve added electrolytes to my fluids each night (dioralite) when I have my feeding pump running because I’ve been trying to play catch-up. I don’t reply it’s been bloody hard. 

I have pushed myself each day but have desperately tried not to let it impact on the next day – and to be honest I have done pretty well. Food wise I have tried to take part in meal times but have found it pretty hard I’ve ordered children meals and picked at that, so that I looked and felt part of the family activities. I’ve also managed to hide my chokes and coughing fits……. I have learnt over time to suppress the choke\panic reflex and I just throat clear if I can or calmly ask G to help … it something I’m actually pretty proud of – the main reason I’ve don’t it is panicking makes the choke worse but also being a mummy I try and not scare the kiddo’s . 

I have slept til 9 or 10 most days and with having the pool here we haven’t had to go out to entertain the children (they’re no allowed to go in the pool without an adult on poolside)

Thursday we had our big trip planned so Wednesday I had extra fluids and feeds overnight and slept in in prep for the big trip. 

Thursday we went on a boat trip to see the Caves and Dolphins (the dolphins were a bit shy),  getting to the marina was a 15 to 20 min taxi ride then there was a bit of a walk to the marina where we had lunch and drinks. I was pretty glad to have a sit down and drink cause it was massively hot – we weren’t due to depart till 4 and had hoped it would be cooler by then …WRONG it was still at least 36 degrees….  but because our party had my nanny who is in the 80s and children (and of course me) we chose a boat that had some shade. 

This is who we went with Ocean eye they were brilliant and we DID see some dolphins .. actually me and Daisy saw them first which was awesome and then standing on the boat (folding on for dear life ) whist it sped over the ocean was such and exhilarating feeling – the wind through my hair – it was AWESOME. 

We got off the boat and found a taxi I WAS EXHAUSTED…. seriously knackered – my speech was shit and I was nodding off at a seconds notice, we arrived at the restaurant and I did my usual order a children’s item, and wow it went tits up!!!! 

Almost immediately I choked on the food, and spat it out, and had some drink.Despertaly thing to hide it as a member of our party is *grossed out by my peg and all things related ) I then tried again and this time I couldn’t trigger a swallow so I was doing my chin tucks and NOTHING – I had to spit it out. But in my desperation to be normal I forced some food down and BANG I had food stuck in my throat- cue coughing fit – I did keep calm it enough to walk outside and have a further coughing fit  followed by a visit to the toilets to vomit – I had managed a grand sum of nothing. and was left feeling totally crap and embarrassed (yes I know they’re family and probably don’t care – but I DO… ). The NEED  to look and feel normal is still as strong as it was 6 years ago – I don’t think it will ever leave. 

We came home and the pain of the day hit me and it was a 9 out of 10 – so bad that I needed G to help me go to the bathroom and wash up before bed.  Its not often that I need G to help me with EVERYTHING down to my underwear. I then needed putting to bed, and we made a makeshift fixed sleep position with a duvet from the cupboard and various pillows and cushions. 

I had my max meds including the liquid one PLUS we used the lidnocane patch that we purchased over here in Portugal (I will post about these seperatly soon). 

I woke several time cause of pain and took today very slowly – that said I would 100% do it again – I think sometime we need to take the hit … I  know its coming but we don’t let it stop me …. some might say it’s daft to do it but you know my mantra “fuckit”.

any who this is my penultimate night here and I have had several vodka and cokes so its bedtime. 

sending love to all who’ve managed to read this to the end you are amazing and Iove you lots.. keep fighting whether its cancer, a long term illness or another battle  … you are strong. 

feel free to message me anytime 

mrswiggy.sw@gmail.com

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Taboo… surgery – way TMI – Prolapse Surgery


Its no secret that i have bladder issues but for obvious reasons i have chosen not to mention my bowels – but you know what?! EVERYBODY POO’s and farts FACT and being able to speak to your doctor about this without be embarrassed is hard – but necessary at times.

So lets rewind – years and years ago i was diagnosed with a prolapsed bladder, this is, the wall of the vagina at the front supports the bladder – keeping it up rite – but my support wall had collapsed somewhat, this is called a cystocele or bladder prolapse -the symptoms as listed on google are ..

The symptoms of a cystocele may include:

  • a vaginal bulge
  • the feeling that something is falling out of the vagina
  • the sensation of pelvic heaviness or fullness[
  • difficulty starting a urine stream
  • a feeling of incomplete urination
  • frequent or urgent urination[12][1]
  • fecal incontinence[13]
  • frequent urinary tract infections[7][12]
  • back and pelvic pain
  • fatigue
  • painful sexual intercourse[12]
  • bleeding[14]

these can and most probably are effecting my bladder function and the chances of getting UTI will be increased due to not emptying fully. As you know i self catheterise, but I’ve not mentioned i regularly have issues with this caused by the prolapse. So fingers crossed.

Sometime after the initial diagnosis of the bladder prolapse i noticed i was having had problems going for a number 2 – and it turns out there was a very similar issue on the back wall of my vagina!!! Amazing, I get all the luck.?!? – !! (although i will say i have very little symptoms from this especially looking at this list. )

The symptoms of rectocele may be vaginal, rectal or both, and can include:

  • A sensation of pressure within the pelvis
  • The feeling that something is falling down or falling out within the pelvis
  • Symptoms worsened by standing up and eased by lying down
  • Lower-abdominal pain
  • Lower-back pain
  • A bulging mass felt inside the vagina
  • Vaginal bleeding that’s not related to the menstrual cycle
  • Painful or impossible vaginal intercourse
  • Constipation
  • Problems with passing a bowel motion, since the stool becomes caught in the rectocele
  • The feeling that the bowel isn’t completely empty after passing a motion
  • Fecal incontinence (sometimes).

Oh and just for shits and giggles i also have a uterine prolapse and here’s the symptoms for that one

Mild uterine prolapse generally doesn’t cause signs or symptoms. Signs and symptoms of moderate to severe uterine prolapse include:

  • Sensation of heaviness or pulling in your pelvis
  • Tissue protruding from your vagina
  • Urinary problems, such as urine leakage (incontinence) or urine retention
  • Trouble having a bowel movement
  • Feeling as if you’re sitting on a small ball or as if something is falling out of your vagina
  • Sexual concerns, such as a sensation of looseness in the tone of your vaginal tissue

S0 – i saw the surgeon back in Feb 2018 and its taken this long to get things moving (i was taken off list when i was in hospital for the 2 months and had to join at the back!!! ). I saw a female doc who had very little knowledge of EDS to start with – and kept saying that i was too young to have this wrong with me and asking if i was i sure i didn’t have a vaginal birth ???

UMMMMM Yeah pretty sure !!!!

Anyway I have the extremely uncomfortable examination – and as shes taking off her gloves after and just says – “Well okay i guess you do! Do you think you need the surgery ??” I was like ?? WTF how the hell do i know – your the friggin doctor. So i said – “well they’re just getting worse so yeah i suppose so” “OKAAAY” she says and what seems reluctantly writes me a blood test form and scribbles on my notes (it looked like spirograph gone wrong). So i leave with a leaflet and the knowledge that in her words “this is a very painful procedure as there are LOTS of nerve ending down there”. Holy Fuck what have i just agreed to ??? I actually felt faint!

I walk to pre-op for bloods and burst into tears – what have i done – in a avalanche of snotty blubber i talk to a nurse I’ve known for 30 seconds – she takes me into a room and talks me through everything and add’s its that doctors last day. The doc hadn’t mentioned this game-changer – coz now obviously she wasn’t going to do my surgery …now arggggggh!!!! On second thoughts I was actually pleased it wasn’t her.

So I was in hospital Sept to beginning November and i cant remember how i found out but i was taken off the waiting list – so once home i call and I’m put back on.

9 April 2019

I was called in to see the gynecology team for a pre-op – now In true Steph style i well and truly fucked this up. I had in my head that it was in high wycombe hospital so drove almost all the way there, but on the way there I suddenly questioned myself and realised I was miles away from where I needed to be – so bombed it back to Stoke Mandeville Hospital. I was 15 mins late for my appt- I did get a bit of a telling off but it all worked out –

It was the usual medical history and medications and what i was having done Rectocyle and cystocele repair and possible hysterectomy depending how prolapsed it is – I  tell her id be quite happy to have the hysterectomy as it means i wouldn’t have to have a second surgery – if its needed in the future and no more periods would be a billy bonus!
I tell her it needs to before the end of may OR after 14th August as i have a amazing family holiday with my parents coming up and i want to be able to enjoy it rather than be in post surgery pain – she was super understanding. She was so nice he even gave me a hug when she sent me off for my bloods and and a heart tracing.

I had my bloods done with the vampires and they got it first time which is amazing as I’m used to 6 attempts being the norm – but on the way to the hear tracing unbeknownst to me it kept bleeding and it was all down my arm and my stick and i developed a weird blood blister anyways i survived lol.

13th May 2019 7.00 am

This is my surgery date – I’m looking forward to it being over but I’m also mega gutted as it will be a hurdle when it comes to the strengthening i have been working on from the program – so I’m somewhat torn.

I’m now in prep mode – in my craziness I’ve decided i need to loose as much weight as possible before the surgery – 6lb gone already so that’s a great start. I’m going to have to reach out to the mum’s at school and neighbors to help with getting daisy to and from school. Maybe i should kind of do a rota as not to take the mic and rely on one person too much? oh i don’t know.

One things for sure I will be practicing mindfulness with each step.

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Joining the dots … Ehlers Danlos Syndrome EDS


Those that have followed me blog will know I have a plethora of health issues from having my pelvis split whilst pregnant with my son, needing surgery to put metal plates in it to pull then back into place, to slow healing from surgeries, bladder issues, prolapses, dislocations and a subarachnoid spinal cyst and that’s not half of it…

Well around June I saw a rheumatologist at the Nuffield orthopaedic hospital regarding the reoccurring sacroiliitis which was made worse by the fact I have excessive movement in the back of my pelvis ie Sacroiliac joints.  He was very thorough and we spoke about the almost daily subluxations and the dislocations and he said what I had “known/suspected for years” that it looks like I had EDS Ehlers Danlos syndrome, (ill explain in a bit) and that he would refer to University College Hospital in central London to see the UK specialist but warned me about the huge lists.

I was surprised how quickly I received a letter; the first letter was simply to say that they had received the referral and that I was on the waiting list to see Dr KazKaz.

Now this was a name I recognised, she was the top of the crop, she was the big cheese BUT on the many support pages on Facebook that I am a member of I had read horror stories about her, that she refused to diagnosed this person who said had EDS severely and that she was …. Well a bit of a bitch (on reflection it was only a couple of people but they had posted a fair few times) anyways I was pretty nervous, what if she was horrible, what if she said it was all in my head and that I was nuts – if that happened what was next …… I stressed quite a bit about this if I’m honest.

My appointment

From memory my appointment was late morning, thankfully G took the day off to come with me and I’m not sure I would have got there without him (I cannot fathom the London underground – it might as well be Swahili) anyway we arrived 10 minutes before my appointment and initially saw the nurse and my BP was sky high, given its usually in my boots she told me to take a seat, relax and try to calm down after navigating the tube and she redid it and it had returned to normal.

Doc Kazkaz calls me in, and straight away shakes my hand and greets me like a friend. She reads what she has on her screen and checks all is correct, she then asks me about my pain and I explain I pretty much have pain in all joints apart of elbows ankles wrist and fingers, and that I struggle with muscle spasms often.  She asks about my normal blood pressure, which is low at 100/58, she asks if I get kiddy when I stand up quickly, I tell her I quite often pass out when I do it too quickly, I then tell her we discovered in my recent hospital stay that when I’m laying down my pulse is 80, then sitting is 100 to 120 then standing is 150 up to 180…. It does come down a bit if j stay upright but not all the way, she explains that it’s a condition called POTS (Postural tachycardia syndrome). (More info at bottom)

 We then talk about the dislocations and the subluxations (like a half dislocation). She then says to strip to pants and bra and asks me to initially stand, and bend forward and put my hands on the floor and then backwards (she tells me to stop when I’m doing it backwards as it was too far for the joint, but I could have bent way more). I then have to walk up and down her room several times, she was looking at my balance and the muscles and most importantly the joints. Then I lay on the exam bed, she closes the curtain half way and starts her exam, looking at all my scar and my skin looking for characteristic scaring or paper thin skin (I will have the info below). She tests my ankles, and finds them very hypermobile, my knees slightly over extend ie bend the wrong way, my hips are massively hypermobile as is my back, my wrists are and I can put my thumb to my wrist, my neck is stiff due to the cancer treatment ..she probably did more but I don’t recall. She explains there’s a new criteria for diagnosing EDS and that I would have just about scraped through the beighton test, but the new criteria is much better and looks at more joints and the whole person.

So I get dressed and she shares her findings, she confirms that I have Ehlers Danlos Syndrome..

EDS has lots of different types 13 I believe, some are very serious and can even be fatal. She believes I have hEDS which is the best type to have (although its not great), BUT due to the fact that I have issue with my veins, (they are hard to find, I’m almost impossible to cannulate and if they manage my vein bursts) and I have a slight leak on one of my heart valves (I had a ultrasound hear scan) and I bruise extremely badly often with no apparent cause and I think there was another thing but I forget. Because of these there is a possibly I have one of the other types of EDS so she has referred me to genetic testing, hEDS cannot currently be proven genetically but the other types can. Should I have one of the others I may need the children testing just in case.

She was so very lovely, really kind and explained everything and nothing like what I was expecting at all, I’m so relieved to have my official diagnosis, there is no cure, or treatment really but it means I have a reason for lots of my problems and most importantly it means its not in my head !!!

What is EDS

The Ehlers-Danlos syndromes (EDS) are a group of thirteen individual genetic conditions, all of which affect the body’s connective tissue. Connective tissue lies between other tissues and organs, keeping these separate whilst connecting them, holding everything in place and providing support, like the mortar between bricks. In EDS, a gene mutation causes a certain kind of connective tissue – the kind will depend on the type of EDS but usually a form of collagen – to be fragile and stretchy. This stretchiness can sometimes be seen in the skin of someone with EDS; individuals with the condition may also be able to extend their joints further than is usual – this is known as being hypermobile, bendy or double-jointed. As collagen is present throughout the body, people with EDS tend to experience a broad range of symptoms, most of them less visible than the skin and joint differences. These are complex syndromes affecting many systems of the body at once, despite this EDS is often an invisible disability. Symptoms commonly include, but are not limited to, long-term pain, chronic fatigue, dizziness, palpitations and digestive disorders. Such problems and their severity vary considerably from person to person, even in the same type of EDS and within the same family. (https://www.ehlers-danlos.org/what-is-eds/)

W

What is POTs
Postural tachycardia syndrome.

Postural tachycardia syndrome (PoTS) is an abnormal increase in heart rate that occurs after sitting up or standing. It typically causes dizziness, fainting and other symptoms.

Pots is the malfunctioning of the part of the nervous system that controls involuntary bodily functions (e.g. breathing, heart rate) is common with hypermobile EDS. Symptoms include fast heart rate coupled with low blood pressure, digestive and bladder problems, and temperature and sweating dysregulation. You can manage the condition by drinking more fluids, improving your cardiovascular fitness, and if your daily function is severely impaired, taking medication.