Since I last updated you (https://ellegracedeveson.com/2018/02/19/health-update-february-2018/) it’s been a crazy few weeks. I feel like it’s been a whirl wind of emotions and quite honestly, whilst your reading this – you’ll notice that for yourself.
I think I’ve said this before but I really hope you don’t think I’m negative nelly when writing these updates for you all. It’s unfortunately my life at this moment in time and I’m just documenting my life through the highest & lowest points for you all. It’s not easy writing such low stages of my life, especially when it seems to be so often but I want to share with you my journey and raise awareness for my illnesses!
A lot has happened between the months of February till now so let’s get started;
Doctors For Blood Test – 13th Of March: When I saw my new gastro consultant on the 14th of February, she ordered me to have some bloods taken to test all my vitamin levels etc because of my digestive paralysis, not being able to eat, barely being able to drink anymore and me loosing weight. Due to my GP surgery being busy, then it snowing in Brighton, we couldn’t get my bloods taken until nearly a month later but nether-the-less they finally got taken and the next day we had a phone call off my GP.
We already knew deep down I was malnourished as its beginning to show in my everyday life. My energy levels are non existent, my hair is falling out in clumps, I’ve got bald patches, my toe nails drop off when taking my socks off, my nails are yellow, someone can be talking to me and I’ll fall asleep on them mid sentence without realising as I’m so tired and the list continues on BUT the bloods showed that many of my vitamin levels were rock bottom. Some of them we have to wait and hear about from my gastro consultant but two of the main ones my GP did inform us about was;
- my Thyroid dropping to rock bottom again despite being on such a high dose of medication. So he’s had to up my medication by quite a jump, in hopes that it will bring my Thyroid up to the level it’s suppose to be.
- And, my B12 being non existent. Normally, when you have a B12 deficiency which the doctors know isn’t going to go away without a form of treatment, then you have to have a B12 injection every three months. But because mine was literally at 0, I’ve had to have six injections over the course of two weeks (three a week) to try and build up my B12. Then, I’ll have one injection every three months with blood tests in between to test how it’s looking. The injection goes into the arm muscle which wasn’t too bad but by the end of the two weeks I had a achy arm that’s for sure.
Sussex Eye Hospital / Neurology – 15th Of March:
If you remember from one of my previous blogposts I wrote that my Neurologist was sending me to a Neuro-Ophthalmologist as my recent MRI of the brain showed I have high pressure behind my eyes.
Firstly, I had a field test done on both my eyes which came back that my eyes don’t have much range within them. Then after waiting in a room which had no windows and felt like the walls were closing in as it was so hot, for what felt like forever, we finally got to meet with the neurologist.
We spoke about how my headaches have/are continuing to take over my life. Some days I physically can’t move my head off the pillow as my head feels as though it’s being hit against a brick wall repeatedly. Some days I can’t open my left eye as the pressure behind it just closes it completely. Some days I’ll be sitting there and I’ll just projectile vomit as my head is throbbing horribly. I couldn’t really begin to explain the havoc these headaches are causing me as the symptoms continue to develop each day to her as unless your living with this, it’s just indescribable. Anyway, she also ran some tests which lead us to the diagnosis of IIH (idiopathic intracranial hypertension) which is a neurological condition caused by increased pressure around the brain. Thankfully she said that I’m not at the stage of going blind, but she does want me to have regular tests as it has affected my eye site plus, she wants to keep a close watch on the pressure etc.
She then asked me to have some photographs taken of the back of my eyes, which involves some incredibly STINGY eye drops to be dropped in, so your pupils dilate to get a clear photo.
FUN FACT: these eye drops make your eyes go blurry and the room in which the photos are taken is downstairs to where we were. SO my eyes are blurry, I’m in control of a bloody wheelchair and as you can imagine its a complete and utter nightmare. Let’s just say, a door of the eye hospital took a right battering as did the arm of my wheelchair (as a massive clump of it fell off…literally…ops). Then mum dragged me up town after, baring in mind the blurriness lasts up too 6 hours! mayhem.
Hair Cut – 29th of March:
My hair has been falling out terribly due to malnutrition. I only have to touch my hair and massive clumps of it will fall into my hands and I knew it was time to cut my hair to try to reduce the chances of that happening. Also, where my hair is thinning and I’ve got so many bald patches I thought shortening my hair would make it look thicker! So I cut off 12 inches;
Chest Medicine – 3rd Of April:
Finally after waiting nearly a year for this appointment, we finally got to meet the Sleep Apnea consultant!
For about a year now I’ve been really struggling with my sleep, this is due to the fact that I randomly started snoring. I never snored before this but unfortunately, my snoring just continued to get worse as the months went on through this past year and it’s gotten to the point where I stop breathing for long periods of time and I’ll wake up gasping for air etc. I have such bad broken sleep due to this as I’m constantly waking up due to my snoring and I know something has to be done.
My dad actually has sleep apnea so my GP referred me to a consultant and when we met with him, he straight away after filling him in on everything I’ve explained above (obviously in a bit more detail) he agreed I had sleep apnea. Although, he wants me to have a sleep study done first before I have any breathing treatments set up at home. *Fingers crossed* this happens soon so I can get this under control as I’m literally tired 24/7!
Cardiology Appointment – 12th Of April:
Unfortunately my consultant was doing a talk on the day of my appointment so I didn’t get to talk to him but I did meet with one of his registers who seemed a pretty good doctor himself!
For the past couple of months we’ve noticed that whenever I move, I get breathless very quickly which is very unlike me. It’s like I’ve run a marathon and I have to stop whatever I’m doing until I’ve caught my breathe again. Plus we’ve noticed that my lips & fingertips are turning blue a lot more often, even when I’m not cold and this has never happened before (my lips/fingers only started going blue when I got diagnosed with PoTS in 2017, they went blue when I was cold) which we was concerned about as we knew that was related to my heart. So he took my heart rate and blood pressure which was both high but that’s normal for me, he then suggested that I have some tests done. He wanted me to have a scan of my heart to see if the blood is flowing through the valves properly, a lung function test and a couple of others which I can’t really remember the names of. He then took a look at my ankles in which he noticed that I was carrying quite a bit of fluid, which myself and mum had noticed for a while how but he thinks it’s all related to my never ending list of illnesses. Especially EDS!
Gastroenterology Appointment At LUCH / London – 20th Of April:
A hospital appointment which I held so much hope on, I wish I hadn’t of bothered because I just left feeling so deflated and saddened.
Back in 2015, when I was in the children’s hospital, was the first time I was actually sent up to the gastroenterology department at the University Collage Hospital in London as my doctor back then believed they could help but after a year I ended up deciding to leave them as my consultant up there just wasn’t doing enough for me, we was just going round in circles and every time I left her room I was in tears.
Anyway, I think I’ve mentioned this in my last blogpost but my new consultant down here in Brighton wanted me to go back to her as she’s a specialist in EDS. So we did. I knew from the moment we went into her room and she didn’t even bother to say hello, it wasn’t going to be the best of appointments.
Yet again, we ended up going round in circles and it just felt like we was hitting our heads against a brick wall. Thankfully, she did agree to the diagnosis of EDS which means brighton can do much more but my brighton team and ourselves were hoping London would help more than they did. She kept telling me all these negative things, everything they don’t want to do and how she knows that my illnesses will continue to deteriorate but she believes her ways of dealing with it will be better than Brighton’s which was complete bulls**t. I don’t want to go into details if I’m honest as I was a mess after it but let’s just say, I won’t be returning to her again nor will I be listening to any of her recommendations!
Update On Health In General:
Since my last update, my general health has gone down hill to say the least and it’s been a really difficult time.
At the end of March / beginning of April, I started getting this bruised like feeling on the inner portions of the tops of my legs, lower back and bum which just continued to get worse as the days went on. I physically can’t touch my legs as they feel battered and trying to transfer from one chair to another to get upstairs is just impossible as the pain is crippling.
When I first fell ill I actually had the same sort of pain which I was told was a infection of the bone/muscles in my legs so I knew something was wrong this time when it happened again but this time it was worsening. So I went to see my GP who took a blood test to see if my white cells were high, if they were, he’d put me on antibiotics. The next day we got a call to say that actually it wasn’t a infection so that meant one thing, it’s my EDS deteriorating at a chronic rate. After speaking to my GP the only medicine he could give me is morphine tablets to try and make me some what more “comfortable”. I’m currently on the referral list for the Rheumatology so we hoping they might have some input!
I’ve got so many appointments coming up throughout the next couple of months; Rheumatology, Ear Nose & Throat, Gynaecology, Neurology, and the list continues on. Obviously I’ll make sure to keep you up to date in my next update!
Yet again, if you made it this far, you really do deserve a medal as I do tend to go on but I want to fit as much information in as possible. I always want to keep you updated so you know what’s going on.
Thank you so much for your continued support and encouragement throughout everything, if it wasn’t for you guys I really wouldn’t be where I am today!
Sending you all tons of love & hugs as always,