Tag: Hyper Mobility Syndrome

Personal Blogs

My Complex Health

Glitteryguts

I’ve had chronic health conditions for just under ten years now and as time has went by, I’ve been able to sit and reflect on my experiences and journey as a patient with complex health.

My journey started in 2012 when I was diagnosed with Crohns Disease and Ulcerative Colitis. When getting a diagnosis for a chronic illness, you will have different tests done to determine the outcome of diagnosis and the usual standard practice tests will be blood tests and typically a scan of some sort. So what is the issue?

You’ve gotten the tests done so surely this good, right? Wrong. Many patients who are complex first find out this issue when they are really, really unwell and somehow bloods come back within normal ranges and tests such as an ultrasound imaging comes back clear. They have all the symptoms of something being wrong but cannot seem to get the right answers. This was very much the case for me until I had my first Colonoscopy and was diagnosed with Crohns Disease and Ulcerative colitis as well as biopsies being taken during the colonscopy and sent away to the lab for analysis. I also have had numerous MRI scans and CAT scans and they can be a hit or a miss with accurate results. This leads to extreme frustration as you know you are getting worse by the day but health professionals say “your bloods are looking good so thats very reassuring!” When in reality it isn’t!

So, where do you go or what do you do? That’s the next part of your journey and certainly what I have had with mine. You go back to basics by writing down your symptoms, some doctors may trial you on medications to see if your symptoms lessen, worse or stay the same or organise a scope to look inside your bowel. Of course it isn’t always so simple with many complex patients getting doctors who plain blank refuse to take any illnesses into consideration and send you on your way. I havent had that often but I have had some doctors be this way with me, especially old GP’s in the past.

The only advice I can give is to request to see another GP or consultant – as a patient you are entitled and within your rights to do so! Dont give up trying for help for a diagnosis or help with your disease after a diagnosis because of normal results. My other advice would be that when you are an in patient or seeing someone at an appointment, to make them aware that you are complex and that you are unfortunately, not easy to care for.

Today I seen a consultant I have not seen in years since he had discharged me with good bloods 8 years ago. Its important that when health professionals say your bloods don’t show anything that you let them know that this is actually very normal for you due to being a complex patient and you must advocate for yourself. This helps them, help you. That’s exactly what happened today and he was so lovely and understanding. As I have dealt with normal test results for years, I have always made it my priority to try and remember my own health in ways that many of us would not. This means trying to remember what tests show best results, what medications I respond well to, what tests I have had done and the results of them and in what year they took place. Trying to remember what my levels of blood tests usually come back with and also to remember the cut off number for my iron to hit to be able to have an iron infusion. This is particularly handy when you are in A&E or with out of hours services.

I also have problems with my veins and so have fought plenty with people in hospitals who try to take my bloods in places I know will not give them blood due to scar tissue from a condition that I suffer from known as Bechets Disease. This means I also need particular colours of butterflies (the colours reflect what size they are) and cannula’s due to how small my veins are. Many health professionals become very cocky thinking I am giving them a challenge that they will take on and win when in reality it is to actually make it easier for them and also less painful and traumatising for me!

There are many people out there just like me who go through this, some even worse and don’t have any care at all. Support groups has been the number 1 place for me to connect with others just like me who go through this! Over the years I’ve been able to chat and relate to them but also pick up great advice and know I am not alone. It also helps when I do get difficult doctors from time to time, letting them know that this does happen to many people.

I would love to hear more from people with this same issue and so please feel free to get in touch if this has affected you!

Personal Blogs

The Highs And Lows In Pregnancy

Glitteryguts

Pregnancy is one of those experiences that unless you experience it, you don’t REALLY understand it. The good and bad thing is that it is different for so many!

Many women find that falling pregnant doesn’t ‘just happen’ and it can take a few tries and losses to finally get far along enough to feel that “safe zone”. If you are high risk and have lost before, you will find that each milestone feels like a huge achievement. As each day, week and month goes by you still feel anxious, scared, nervous, excited and have a sense of wonder for what the future holds for you as a first time mum.

For me, the first milestone was 12 weeks because I have never, ever gotten that far before. Then came 20 weeks where we also found out the gender of our baby and had the babies weight and organs checked, all of which came back 100%!! It was a huge shock for us due to us both being chronically ill, we worried something would happen or be passed onto the baby so we were super chuffed to hear all is well and a VERY strong heartbeat! Now, at 21 weeks my next milestone is going to be 24 weeks and I feel that at that one I can fully breathe and relax a little bit better without so much worry.

So what have the highs and lows been for me? There has been so many, just to list a few:

  • Losing friends – it is true what they say that when you become pregnant, you realise who is really there for you. One of my friends of years completely blocked and removed me over night. It still hurts to this day but you do learn to come to terms with losses of friendships over time!
  • Feeling the baby kick – it feels bizarre! But it is SO lovely to wake up in the morning by little baby kicking away letting me know they are awake!
  • The hot flushes – oh. my. goodness. They come out of nowhere and can last upto a few hours!! The room can be freezing due to windows open and the fan on the highest setting and I will still feel too hot! Eventually it does settle with some paracetamol and an ice pack.
  • The hunger – this is a funny one! You eat and eat and EAT and you still don’t feel full, only when you feel the indigestion pain starting and the sick burps from your body letting you know that “girl you have to stop!!”
  • The amazing support – you connect with your friends and family in a much different way than before. Especially those who have had children of their own as its nice to have something in common. For friends who haven’t had kids yet, its nice to be able to share this experience with them!
  • The fatigue – this part is probably the worst. As I have said previously, 10 years of chronic illnesses has not prepared me for how tired you become when pregnant. Before I would laugh it off when people would tell me how tired you get when carrying! Naps have become my daily routine and really do help.
  • Looking at baby clothes/items!! – looking at all the cute items and clothing you can get for your baby is the best feeling ever! Everything is so dinky and cute! It makes you that more excited for the arrival of your baby.
  • Blockages/constipation – this has been super difficult! Just a few days ago, I had a really bad blockage and was vomiting real hard. I was super close to going to hospital but eventually after sipping on diluted laxatives from 6am, it eventually did clear. The constipation makes my stoma quite swollen so sometimes it can be painful however having an Ileostomy means there are now nerve endings so you really don’t feel much apart from pressure and swelling which is like a tightness.
  • Lastly (this one is very dependant on you and your pregnancy) the pain – luckily my crohns hasn’t been too bad but everything else has not been so kind on my body! I was diagnosed with PGP (pelvic girdle pain) which is super painful along side having Hyper Mobility Syndrome – my joints dislocate and pop back into place almost daily, sometimes multiple times per day. So I have to rest quite a lot! All it takes is a sneeze or cough and my hip clicks and pops.

It’s been really lovely to document my pregnancy journey not only here, but over at Trio Healthcare too where I talk about how pregnancy has been with a stoma. When I first became an ostomate, there was no blogs or information available about pregnancy with an ostomy and so, I never knew what to expect or any advice on how to cope with things! I hope by sharing my experiences, that it helps anyone out there with an ostomy feel reassured and have some advice on becoming an ostomy mum! To start with, I was so worried about how it would affects my stoma and my chronic illnesses but in time like with most things, you learn to adapt and cope with what your body throws at you. You learn to grow through your pain and bad experiences and turn them into something good! My number 1 advice would be is to listen to your body, so often we push ourselves to do that bit of housework or go for a walk when our body feels ready to collapse with tiredness! Rest is so important.

Personal Blogs

Pregnancy At 19 Weeks

Glitteryguts

I can’t believe I have reached 19 weeks already! Time whizzes by! Only feels like yesterday that we announced our rainbow baby.

Firstly, pregnancy is HARD guys! Not even 10 years of chronic illness, surgeries etc has prepared me for this whirlwind. Having said that, I am getting really excited! Last week, I started to feels kicks after having felt butterflies from around 16 weeks. Let me tell you – it’s a bizarre feeling! The baby likes to kick right where my butt used to be! (Not even outside my belly and it’s causing trouble already!) We have started to gather baby items too which makes it that even bit more exciting to see everything in the babies room.

Yesterday, we went to Cullen Beach with my in-laws and their dog Zak, it was SO lovely! There was a fab wind so even though it was warm, the wind kept me cool enough to enjoy a walk on the beach – watching the dogs play and paddle in the water. Biggie took a plunge and even went for a little swim!! We also enjoyed a lovely ice cream and then went back to my in-laws place where a big box of baby stuff was waiting for me!! I could have cried as it was such a lovely gesture and jaimie’s mum got me the most beautiful Disney baby changing bag, pictured down below! I am obsessed with Disney!

Last week I went past to visit my mum who got me these gorgeous aristo cat pyjamas that I had spyed in primark just 2 weeks prior when I had my Blood Pressure attacks in Primark and had to leave as I could barely walk from passing out! The baby also got a little comfort blanket attached to a cute little sheep! I have had some lovely gifts from other people too, which I will be doing a video on at my virtual baby shower, to thank everyone on.

We have our gender scan on the 15th of June and so, have been asking what people think it may be! To my surprise, it’s totally 50/50 on the votes! So we will just have to wait and see. My Pelvic Girdle Pain is beginning to get worse as the physiotherapists had said would happen however I am relying less on antisickness some days and my migraines aren’t as severe but I do unfortunately get them daily. My blood pressure drops are also beginning to happen almost every day but I am not letting any of these things stop me from trying to continue my daily life, some days I am bed bound but totally make up for it on the days I am able, like yesterday.

A few things I have noticed so far are ; increase in thirst, heart palpitations, restless and sometimes very little sleep, fatigue, feeling of a small dog being carried on my stomach!, breathlessness, dizziness and increased hunger. My hair also seems to be in better condition and my nails grow like no tomorrow! My skin is also doing really great and my weight hasn’t done too bad either as I try to keep a balanced diet and my cravings are mostly healthy stuff too! (Weird.)

So at this point, I am 50/50 of enjoying pregnancy but also still finding it super tough! So hopefully it keeps going on up from here and next time I update you all will be after my 20 week/gender scan! Lots of love from bump and I x

Chronic Illness Blogs, Life With A Stoma, Mental Health Blogs

We Have Moved!

Glitteryguts

Baux and myself settled in!

It’s been a while since I gave you all an update! My laptop got completely rebooted by my friend John who used to work in a computer shop and now fixes computers etc in his spare time. So even though my laptop has been fixed you’re probably wondering why I haven’t been blogging! For the past few months we had been preparing to move so we had to clear out E.V.E.R.Y.T.H.I.N.G because I had way too much stuff!

We have been in our new place a week past Sunday and we are absolutely loving it! What had drawn us to this place the most was that there was a bath and shower separate in the bathroom and there is no big garden so we hadn’t the need to to cut grass as we struggled with that at the last place. To start with at the new house I really struggled as just three days before moving I had dislocated my knee cap twice so I had this awful leg brace on and I couldn’t walk properly (it’s still causing me pain.) The bath has been absolutely lush and I have been using my bath bombs! We had another few hurdles to bypass whilst moving which included my huge bedroom wardrobe having to be taken to bits and rebuilt and other minor little things. The dogs have settled in so much better than we expected too which has been great. The best part though is not living under temporary accommodation anymore and having anyone with issues living above and also not having a party animal living above making my life an absolute hell anymore.

My health is up and down at the moment.. stomach pain has been quite intense, my reflux hasn’t been great with frequent heartburn and feeling sick, my headaches have returned again, joints are not so well and I am super exhausted. Stoma wise I have been having A LOT of bag leaks. Luckily I haven’t needed to visit the doctors since my knee dislocation but who knows how long that will last – all chronically ill people know the drill with that! Emotionally it has been a really rough ride through 2020 so far and I got to a really bad place where I really was not coping after loosing my Aunt Nina, and old school friend and an old work friend. Hopefully though this is the start of a better period of time with two friends expecting baby girls I am super excited for them to arrive!!

So for now, my time is spent playing Animal Crossing, trying to sort out the new house, resting and catching up with Family and Friends. I have been told due to my Hyper Mobility Syndrome that dislocations are very common and it will more than likely happen again (but im going to hope NOT! Its so painful.) Today it is SUPER cold so I had a shower, got back into my P+J’s, put on harry potter and my partner and his sister are baking some goodies including my favourite – chocolate sponge cake with cream!! I hope you enjoy your day ❤