. i . am . not . my . condition . 

I’d like to introduce you to Tiffany…

Tiffany is very close to me. In fact she’s been with me for as long as I can remember.
She sits over my shoulder, judging, laughing, whispering in my ear.
Sometimes she’s quiet. Sometimes she’s loud. She can sometimes be drowned out. She remembers comments from other people, writing them down in a little book.

She likes this time of year. It’s a time when I see people I haven’t seen in months. But it’s also a time for Tiffany to appear. She smugly brings out her little book.

“Haha, you’re not wearing that are you!?”
“People are turning up… Are you going to do something with your hair???”
“You didn’t pack eyeshadow? Wow people are gonna notice that”

Tiffany is not helpful in the slightest and she feeds on conversations when they get personal.
I find Christmas mentally and physically exhausting. I know it’s manic for everyone but I find it hard to enjoy the festivities and end up on edge.

This year we spent Christmas morning with my family (minus my brother).
Tiffany popped up during present opening.
“Everyone HATES what you got them!! You are so cheap!”
“F*** off Tiffany” I say, but with every present opened I find myself justifying the gift.
“I’m sorry it’s not alot. I would have got more but…”
“It’s fine! We know you’re short on money” everyone says… but Tiffany is smirking.

We move onto my in-laws for the evening. Tiffany repeated her routine when we opened presents.
“Oh you made something… How cheap and tacky! No one wants your home made s***!”
“GO AWAY!!”. I survey people’s faces but they’re hard to read…

We stayed over at the in-laws in order to host the extended in-laws for the annual Boxing Day get together.
Tiffany is in her element for this. She knows people are going to talk about my health and my work.
Everyone asks about my back. They’re happy to see me up and about.
“They think your faking…” Tiffany whispers in my ear.
I panic. I need to justify myself. I fumble my words and avoid eye contact.
“By the way, your jumper is stupid…”
I like my jumper. I chose it and my mother in law bought it for me specifically for Boxing Day.
“Yeah well it doesn’t go with your outfit… why the f*** are you wearing red tights anyway?”
Tiffany is mean. She judges my appearance constantly.

Over dinner, I’m talking to someone about my back and health. They ask about my plans for kids, given my weak back and degenerating condition.
Tiffany laughs sadistically.
“Go on… tell her how your a broken woman… Unfit for purpose.”
I explain that I’m currently under fertility clinic and we’re hopeful medication will work. Tiffany doesn’t win this one… Hope prevails.

We all gather in the lounge to hand out presents. With the help of my mum, I made little stockings and put a little gold Lindt bear in each.
“Why do you insist on giving out crap stuff each year? No one here likes you anyway…”
I tell Tiffany off. Everyone seems to appreciate the gesture given our current finance situation.

Tiffany follows us to lunch the next day with some more extended family.
“Could have washed your hair… Everyone can tell…”
I fumble with my hair.
“You’re a bit over dressed… sequins really?”
I pull at my dress and squirm in my seat.

Tiffany is sat with me now…
“People don’t care what you write…”

Tiffany is my anxiety… I enjoy the days when she takes a break. I like it when she lets me sleep but tonight is not one of those nights.
She sits here tapping my shoulder…
“What do you want Tiffany?”
“Nothing… but you should be worried about something”

She’s relentless. She brings up the past. She convinces me that everyone hates me. She tells me that no one will understand.
I hate her. She shapes me but makes no improvement.

You may think it strange to give my anxiety a name. But by doing this, it becomes less of a part of me… It’s not MY anxiety. It’s Tiffany… I can battle her instead of battling something that’s inside me.
I hate the New Year, New Me thing, but in 2018 I hope to lose Tiffany more often.
I’m going to stand up to her. She’s not going to get to me and I’m going to live my life instead of worrying about fictitious opinions and judgements.

2018 is Goodbye to Tiffany.

. diamonds . are . forever .

They say diamonds are a girl’s best friend.

Diamonds are great and all, but I have something priceless and alot harder to find.

I have an amazing group of friends, all with their own quirks and uses.
They recently called me out on my slightly passive aggressive post about people not being around. I’m kinda proud of myself in a way because I feel I made my point but also owe them an apology for being a raging b*tch.

I’ve been friends with most of these girls for about 13years and I am still learning new things from them.

For starters, you don’t have to talk to someone or see them every day for them to be a best friend. Every time we get together it’s like no time has passed at all. All that’s happened is we’ve grown.
When we were at school our conversations were probably all about boys and crushes and gossip. Now we’re adults, we talk about politics and mortgages and weddings and grown up things.
I know they’ll be honest with me. I’ll put any problem to them and I’ll get such a vast range of advice and opinions. But sometimes the odd bit of gossip gets in and it’s like old days.
We go from Brexit to OMG and back again.

I also want to get out of the habit of saying “Best friend”. I don’t have a best friend. These girls are all just as important to me and I would hate to lose any of them.
I may not get one to one time with everyone in the group but I do love them equally and unconditionally.

I recently filled in the form to claim Personal Independence Payments due to my declining health. One of the questions was regarding social interactions. I wrote that I am sometimes anxious in group situations because I feel I will say something wrong or sound stupid.
The thing about my friends is that they don’t seem to care. I can be comfortable with them and despite my lack of filter, they’ve kept me around.

A common thing I see with people (including me) with chronic illness is social isolation.
I’ve heard it so many times: “Well, I did have friends but then I got sick and now I don’t because they stopped making effort”
The last few weeks have been incredibly lonely, there’s no doubt. But one evening with the girls and I just feel like everything is right again.
The effort with friends needs to be equal. You can’t expect people to keep chasing after you. If someone doesn’t send you a message then message them! They may be busy or have stuff going on.
Don’t isolate yourself and be a victim because that gets you nowhere. You just end up alone carrying a burden by yourself.

One of my new year resolutions will be to make more effort with my friends. Send messages, arrange meet ups and be a good friend.

Distance and time mean nothing when you have people that mean everything. And if diamonds really are a girls best friend, then these are my diamonds…

. unlimited . and . unconditional .

My recent “events” have really cleared up a few things for me.
It doesn’t take much to show you care, but it also doesn’t take much to show you who cares.
So when I didn’t get even a text from some friends, it started to put things into perspective.

Being chronically ill is really lonely. When you’re stuck in hospital (and now in the house) you’re cut off from everybody. The only people I see are my husband, family and doctors.
It’s also incredibly exhausting, so I don’t really think about making the first move.
And at a time like this, when I’ve had major emergency spinal surgery, I don’t particularly think I should have to make the first move. Not with people I consider friends.

But there are some people who have been amazing through the last 2 weeks and I’m not really sure how I would have managed without their presence or messages or kindness.
Instead of dwelling on the negativity, I want to thank the people who really stood out.

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Of course, my husband Jim is top of this list. My constant rock and absolute superhero!
He drove 240+ miles while I was in hospital and came to visit every day for the entirety of visiting hours. He even spent his birthday in the hospital with me!
This guy does so much for me that no one sees behind closed doors; he has washed me and dressed me, he has literally picked me up off the floor when I’ve fallen. He leaves the house at 6:30am and gets back at 6pm, only to have pick up after me because I’ve dropped things that I can’t reach. I am constantly asking him to do this, do that and not in a malicious way but because there’s so much I’m unable to do that he has to do for me.
He married me knowing things would likely get worse, but most importantly he is the only person who understands everything I say about my condition because we have to live it together. When I say he’s my rock and superhero, I’m not saying it in some mushy cliche way… I’m saying it because he is what keeps me together. He is my calm in an otherwise stormy life and although I throw so many stresses his way, he fights each one at a time. Everyone tells me that I’m lucky to have him… I don’t need reminding. I know I’m lucky and I want to cherish every moment because I sometimes fear that luck might run out because honestly, who can be this damn lucky!

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Next on my list is my parents.
Not everyone has a traditional family unit, but I’m lucky I do.
My mum and dad have been a huge help so far and I know they’ll continue to be there if I need them. My mum lent me night clothes and underwear for while I was in hospital and put a wash bag together (which unfortunately went missing during one of the moves… I was so looking forward to using all the mini toiletries!). She came to visit on majority of the nights and even managed to drag my dad in once! He’s never been a fan of hospital visiting as it requires small talk. But he did take me to an appointment after I was discharged and bought me breakfast that morning! They then had me stay with them overnight so I wasn’t alone.
My dad’s then taking me to get my haircut on Friday. He might not be a conversationalist but he his a great taxi service!

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My siblings are pretty awesome too!
My sister visited most nights and waited with me for the 3hrs it took to get discharged (along with my niece and brother-in-law who was bunged up with a horrible cold).
Before being admitted, she also drove me to the doctors and we had about an hours wait there… Not sure if its her, but it seems whenever she does me a favour there’s a huge wait involved?
My brother came to visit too, and somehow managed to persuade one of my nephews to lend me their Nintendo DS. He has a bad back in a pretty screwed up state like mine, but he’s also 15yrs older so options are more limited. He was originally supposed to be bringing me home but the plan changed when I had to stay in an extra day but the intention was still there and atleast I know he’s only a message away if I need him and is one of few people who REALLY know what I’m going through.
Both my brother and sister received calls with me crying down the phone and they both did a pretty good job at comforting me.
The same can be said for my sister-in-law, who came before, during and after shifts. I called her when I returned to the ward after my operation and she came running to listen to me sob away.

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In extension to my family, there’s Jim’s family too.
His parents came to visit me a few times in hospital, but prior to that they’ve both taken me to appointments and his mum spent a day a few weeks ago cleaning the house.
His mum calls and calls and calls and texts (although I’m usually asleep) and they’ll keep popping up even after this flare has passed.
His extended family have also been sending so many supportive messages, cards and flowers and I’m so grateful for their constant concern.

Now onto friends…

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Grace has been my friend for 15 years but it was only after secondary school that we became best friends and since that point, I can’t imagine life without her… or her mum, Ruth!
These 2 ladies are the most supportive pair there is and you can trust them to reciprocate any love and support.
I have visited Grace a few times in hospital and there was no way she wasn’t going to be at my bedside atleast once. On many occasions, if I can’t get to her then she comes to me and she always brings the best Get Well Soon gifts!
And a few years ago, Ruth came to the rescue during an unexpected flare up when it seemed everything was out of my reach. She came to my house, fed my rabbits for me and stuck around for a cuppa to make sure I was doing okay.

BK

And on the topic of school friends and their mums, there’s a mother/son duo who have been pretty awesome over the years.
I’ve known Blake since 2004 and Karen has been around alot of that time too.
There were times through school where we were like best friends, and when we weren’t we still remained amicable and I’m so glad that’s carried on 13 years later. If I wasn’t talking to Blake, I was probably still talking to Karen… She probably knows more about me than he does!
They’ve both been super supportive over the last few weeks and always pop up when it means the most. You don’t have to be there in person, to be there for someone and these 2 totally prove that! I also know if Blake’s health wasn’t rubbish at the moment they’d be here knocking my door down (and not just because Karen wants to meet my crazy cats!)

With both these mother/child combos, Grace and Blake both have chronic conditions and Ruth and Karen have to see them through so it is really good to have 2 great friends who know what I’m going through and 2 extra mums to give me some perspective and support to get me through it.

CP

Another old school friend who knows what chronic illness is like is Christian. I’ve also known him since 2002 but only really got talking to him this year after he and Jim started chatting through a mutual friend.
Unfortunately due to his own illness, he’s kinda nocturnal at the moment so I know I have someone to talk when I can’t sleep. But he’s another example of being there doesn’t mean being there in person (Although he did offer to come visit me in hospital!)

Thankyou

I am honestly so thankful for all of the above people. I hope I can reciprocate all your wonderful support some day when I’m “better” and seriously thank you! I don’t know what I’d have done without each and every one of you.

 

. coming . soon .

From this week, I hope to start “Feature Friday”

With this, I want to feature people with chronic or invisible illnesses not only to raise awareness for different illnesses but for people to see how others are affected in ways we can’t see or even imagine!

I have asked my insta-community to put themselves forward but if any readers would like to feature then please contact me!

. mayday . mayday .

This time last week I was sat in A&E in the most immense pain I have ever encountered. Pain that I NEVER wish to feel again.
I was 5 hours into waiting for a relief and I would take anything by this point, it was excruciating.

– THURSDAY –

Around 15:30, pain suddenly started pulsing in my left calf and behind my knee. Jim helped me upstairs to lay down but nothing was alleviating it. Tears streamed down my face and it was getting worse and worse.
He suggested we go to A&E, something he’s always tried to avoid in the past. He’s never seen the point of waiting 3hours just to get some paracetemol.

We got to my Basingstoke A&E which is about a mile from home. Triage was done at the door and I was entered onto the system with “left leg pain requiring observation”. I personally don’t think much of their “streamlined” triage as I then had to be re-triaged because the description was too vague.
I explained that I had an epidural about a month ago with 2 previous surgeries and hEDS. The 2nd triage nurse did some observations and then send me outside to wait for a doctor.

Still crying with pain, I waited to be called. I was eventually called into a side room and seen by a Nurse Practitioner who told me to change into a hospital gown and lay on a bed. She gave me entinox and felt up and down my leg to check for altered sensation. She asked me about my medical history and questioned why I had gone to that A&E and not Frimley Park, where my orthopaedic consultant is based. I thought, what a ridiculous question!! She then told me that unfortunately no one would see me there as my pain was too complex and I should have gone to Frimley (20 miles away!). She discharged me from A&E with the recommendation to either go home or go to Frimley.

So at about 19:00 and still with no pain relief, we left for Frimley. As the Entinox wore off, the pain hit harder and harder.
We arrived at Frimley and Jim found me a wheelchair. We went through the process again: reception, triage, wait… Each time explaining that Basingstoke didn’t want to treat me, showing the discharge letter and being asked if it was true.
I was called through to Minor Injuries about 22:00, where I was told to wait for the on call Orthopaedic doctor. People came and went with sprains and fractures.
One guy had broken his nose and had been waiting about an hour less than us. He got impatient and asked how long the wait would be. He was told there were no doctors in minor injuries and he wouldn’t be dealt with any time soon. He went home with 2 tampons up his nose.

The Orthopaedic doctor finally made her way down to A&E to assess me. Again, my legs were assessed and she asked all the questions I’d already been asked about 4 times that night. She gave me a choice; to go home with stronger meds or be admitted for some even stronger meds overnight… I chose the 2nd option.
I was eventually found a bed around 1am on one of the Orthopaedic wards. I was given some morphine and was finally able to get some sleep… Jim had the 20mile drive back home; not something he had expected to do alone.

– FRIDAY –

The next day I continued a regime of Cocodamol and Oramorph. I had visits from the Ortho team, the Spinal team and the Pain Nurse. They all said I could probably go home with my medications increased. The pain continued to intensify throughout the afternoon while I waited to see each doctor.
The afternoon observations were done and the usual question was asked: “Have you been to the toilet today?”. Well, no I hadn’t? I’d drunk about 3 jugs of water so why hadn’t I felt the need to go? The nurse did a scan which showed 675ml in my bladder. I tried to go but nothing happened no matter how long I sat there thinking of babbling brooks with the taps running.
They decided to catheterise me and send me for an MRI scan which was the most painful and uncomfortable scan I’ve ever had. I usually enjoy them; 20mins of laying there listening to music. But this time I was in so much pain that laying still was hard and being flat on my back just made it worse.
The Spinal consultant appeared soon after I returned to the ward. He told me I had a massive disc rupture and I’d need to have an operation the next day. I was to eat nothing after midnight and have the catheter removed over night to see what happens.

– SATURDAY –

Nothing happened. Saturday morning came and I was still unable to go. I’d had IV fluids overnight as well as drinking like a fish. So that was settled. I was having surgery.
I was prepped for theatre and left the ward about 8:30am.

I woke up in recovery around 11am, unable to open my eyes. They were so painful! The nurse laid some cold wet bandages over them while she called for a doctor. The anaesthetist came to check on me and took a look at my eyes. He couldn’t see anything in them so he said to keep the wet bandage on them and get them checked when I get back to the ward.
I couldn’t call Jim as I didn’t know his number and without my phone and unable to see I called my mum to let her know I was done and awake… You never forget your parents phone number! She said Jim had called a few times but they kept telling him I was still in theatre so they were worried.

I was in recovery for a few hours. While in theatre, there had been a mess up and we had to wait for a bed to become available.
Still unable to see and having been re-catheterised, I was taken back to a different ward (the 3rd one since my admission). They did my observations and then I was allowed to make some calls. I called my sister-in-law first, as she was working just down the corridor on a different ward.
I get really emotional after general anaesthetic so I cried down the phone and then cried when she arrived.
Jim, my mum and sister also came to see me that evening. By the time they left, I was able to open one of my eyes.

Hospital Eye

 

– SUNDAY –

The next morning, I was taken to see the Ophthalmologist. By this point I was able to open both eyes but they were still painful and itchy and my vision was blurred. The doctor gave me drops and sent me on my way with “healthy” eyes.

The rest of the day was really busy! I had bed physio and a parade of visitors.
My parents, my grandad and aunt, my friend and her mum, my in-laws and Jim visited me that afternoon finished off with my sister-in-law coming to see me before she started a night shift. Safe to say, I slept well that night amongst all the biscuits and chocolate and cards and balloons I’d been brought.

– MONDAY –

Monday was supposed to be a productive day. I was going to do physio and be sent home without a catheter after seeing my proper consultant.
The catheter was taken out and I drank everything in sight. Following a lot of discomfort I had my first success of the day!
By the time the physio came, I was feeling incredibly sick which we put down to all the meds and new surroundings and lack of sleep. She got me up for a walk with a zimmerframe but wasn’t going to risk putting me on the stairs.
By the time my visitors (Jim, mum, my sister and niece) arrived, I was feeling a bit better, but still a bit odd and still blurry eyed.

Hospital Holly

 

– TUESDAY –

Tuesday was Jim’s birthday and I felt so bad for still being in hospital. To make up for it, I got some donuts sent to his work. If I didn’t earn his favour, atleast I got some fans from his office.

I had to be sent home today so I was raring to go for the physio.

She turned up and wheeled me down to a small room at the end of the ward. It had a small stair case of 3 steps up and 3 down the other side. This was going to be a piece of cake!
Now, I’m not sure if I was over confident or if I just wasn’t ready but the physio said I couldn’t go home. I was too shaky and this was just 3 steps! I definitely wasn’t ready to handle a whole staircase, let alone go home unsupervised and be going up and down stairs.

I was distraught. I called Jim and cried down the phone. I then called my sister and cried down the phone. I then called my brother and… well, you get the idea.
Everyone said the same thing… You can’t go home unless it’s safe for you to do so. Its in your best interest… etc etc etc

The consultant who operated came to see me that afternoon. He said that when he opened me up it was the biggest disc prolapse he’d ever operated on and while operating the surrounding discs were trying to protrude… In laymen terms, I’m really broke!

My brother came to visit that evening with my nephews. My oldest nephew kindly lent me his Nintendo DS to keep me occupied.

Hospital Boys

My sister kindly wheeled me down to the hospital shop to buy Jim a card and balloon.
After everyone left, Jim, his parents and me went down to the hospital restaurant to have possibly the saddest 25th birthday dinner.
He opened some presents and had cupcakes his mum had bought.
I definitely owe him a do-over of his birthday when I’m feeling better.

– WEDNESDAY –

Wednesday morning I woke up feeling really ill. I was fed up of being in hospital.
There was a man in the side room who had been given a bell and he rang it every time the nurses didn’t answer his buzzer quick enough. If they didn’t answer the bell, then he started shouting. To begin with, I thought maybe he had mental issues but it turned out he was just a horrible person.
We (The B Bay ladies, with an average age of 72 and were quite honestly the easiest and loveliest patients ever) were sick of this guy by now. I was the newbie to the bay, having been in 6 nights and was sick of him on the 2nd day! We’d been pretty damn patient with this guy up til now. So when he started shouting at the nurses just before 5am the previous morning, I think we were well within our right to be annoyed. One of the ladies in my bay shouted at him to shut up, so he shouted back and thats how I woke up that morning!

Atleast I’d managed to sleep well the night before, but nothing is like your own bed. Nothing is like eating your own food and the menu options for Wednesday night were scrambled egg and bacon, scrambled egg and tomato, or tuna salad… Hard pass on all of the above!

I needed out!

So when the physios did their rounds that morning, I took a few deep breaths and stayed calm.
We decided I needed to practice on the main staircase. I needed it to be as realistic as possible and I needed to know I’d cope at home.
Aced it! I was discharged from physio!
She put in a referral for the occupational therapist to come and see me that afternoon but otherwise I was set to go home. The nurses began the process and I told everybody I was going home!

The occupational therapist came to see me and supplied me with a raised toilet seat and and chair for the bathroom.
It was around 4pm by now and there was still now sign of a discharge letter or my take home medications.

My sister arrived at 5:30pm to take me home, at which point we were told it would be another 2 hours!!
We went down to the hospital cafe for a drink and then onto the restaurant for dinner (it was chips and beans but still way better than scrambled egg or tuna!)
We got back to the ward and we waited… and waited… and waited.
Finally, at 8:30pm I was ready for discharge! I would have ran out of there if I could, but I settled to being wheeled out by niece.

Hospital escape

We filled the car to the brim, with my zimmerframe, crutches, raisers and stools. Luckily, Jim had taken most of my stuff home over the previous nights.

 

– NOW –

Recovery is going well so far. I’m up and about moving and the painkillers seem to be working. I’m not taking the morphine as much as I was in hospital and apart from being bored out of my mind, I’m doing okay.
I have weeks of this ahead so I just need to take it slow and let my body tell me when it’s ready to do more.
Hopefully in 2018, I’ll be fighting fit again!

stitches

. managing . means . trying . 

I went to the doctors on Thursday and I’ve been signed off for another 2 weeks… Joy!

This is quite possibly the worst flare I’ve ever had.

I’ve got my constant back ache and like usual with an EDS flare, my wrists and fingers were the first to ache and go numb pretty much whenever I do anything (write, cook, use my phone).

Next my knees go “funny”. They itch from the inside and just feel out of place. I try and stretch out the feeling but end up getting cramp in my calves.

My rib cage feels like it’s slipped and whenever I lay down, it’s as though it’s got caught on something. This pulls on my upper back meaning my shoulders and neck then ache.

My hips have been playing up for a while but the nerve pain has worsened since my epidural and now I have the most ridiculous sciatic nerve pain ever! I’ve also had burning pins and needles in my thighs which is a new symptom.

Peripheral neuropathy means my toes tingle pretty much all the time and also means I’m cold most of the time.

I’m on 2 opiates, an anticonvulsant and an NSAID and yet I’m still in heaps of pain.

My hospital appointment has been moved forward to November 28th so although still a while a way, is a month closer. I’m seeing a rheumatologist in February so hopefully I’ll be given some management advice for future flares.

For now, I’m stuck at home on my own and when I do get to go out, I’m between crutches and a crappy wheelchair.

I did however have a good hospital appointment today regarding fertility treatment.
My BMI is now low enough to start Clomid and Provera; two medications to stimulate ovulation.

Although not physically fit, and now really isn’t the best time, it does mean we are one step closer to the pitter patter of little Fletcher feet.
I’ll be reviewed again in January and reviewed quarterly until I decide I’m well enough and in a position to get pregnant.
I’ll then start 3 cycles of treatment. If I don’t get pregnant within that time, I’ll have further tests and checks. From there I’ll either have treatment for any issues that arise or start another 3 cycles.

Fertility treatment takes it’s toll on couples. This isn’t just about me, but about Jim as well. He’s having a hard enough time dealing with me at the moment; you do not want to throw raging hormones into that mix!

This is just the beginning though… If the 6 cycles of Clomid don’t work then there’s IVF which is even tougher.

We’ve discussed the what ifs… adoption, surrogacy etc. I like to think they’re just options we will never need but it’s worth having the discussions now instead of when we’re emotional and mourning something that couldn’t be.

But I have hope. Being down and worried isn’t going to do anything about it. And the same goes for my physical issues at the moment.
I get frustrated about the position I’m in but that won’t change anything.

I’ve just got to get on with it, keep fighting for help and take one day at a time.

. hearing . is . not . listening .

I was diagnosed with Ehlers-Danlos syndrome at the beginning of 2015 and from that point I should have been referred to a specialist for ongoing treatment.
Unfortunately, I had to see a private consultant to get the diagnosis and at £300 per hour I couldn’t afford to continue to see him, nor the £75 per session physio he referred me to. I went on my merry way, happy to have been diagnosed and convinced that this would be enough for my GP.

It wasn’t.
So when we moved to a new area last year I tried again.
No. Again.

Instead, each time I was given a ridiculous number of prescriptions and told to try medications that I’ve already tried. I’ve been dealing with the pain since I was 12, but each time I see a new GP and each time they want to start at the beginning.
And I never seem to see the same GP twice! What happened to the days when you had one primary doctor!?

So when my hip flared up last week, I’d had enough. I was ready to fight!
Except I couldn’t get past the receptionist. My GP surgery currently only books on the day appointments; Call up at 8:30 and hope you’re lucky caller number 1, otherwise you ain’t getting in! Unfortunately, when I called on Friday morning I was placed in a queue which is always a bad sign.
Something they do offer now though is an online form for specific help, general advice and administration such as sick notes and medical reports.
So I filled in the form which guaranteed a response by the end of the next working day. I was pleasantly surprised to have a call back within the hour!
A doctor I’d never heard of called and decided it would be best for a face to face appointment. So I was booked in for yesterday afternoon to see another doctor I’d never heard of.

I went along and was greeted by a very smiley, youngish looking doctor called Tim. He was raring to go and get me fixed! “Ahh, so naive”, I thought.
He asked what he could do, so I explained that I’ve been struggling more and more with my hip and knees and although I’m seeing an ortho consultant, he is just there for my back and doesn’t really do much regarding my EDS. I then waited for a blank expression and for him to blag his way through the rest of the consultation.
Except that didn’t happen…

He knew what Ehlers-Danlos is!! Result!!
He asked if I have any other EDS related health issues (none that cause me bother; occasional flares ups of IBS but nothing I can’t deal with, the odd palpation here and there but I’ve had clear ECGs and my asthma has been well managed since I was a kid).
He did a physical assessment; laid me down on a couch and moved my hips and knees every which way and concluded that I’m definitely “spongy” and a “classic hypermobile”.

“Well, there’s now doubt you’ll benefit from seeing a specialist so lets refer you to the hospital” – I’m sorry, what? I didn’t even have to ask. I didn’t have to fight! This guy was like Dr Amazing!
“And what do you want to do in terms of pain management” – Again, I’m sorry? I was being asked for MY opinion.
Obviously, I need some kind of meds to manage my pain but I didn’t want to be plyed with pill after pill… The little ones for muscle pain, the blue ones for nausea, the yellow ones for nerve pain, the red ones for joint pain, the big ones to counteract the constipation I’ll get from the yellow ones, oh and the red ones will make you feel really drowsy so it’s best not to leave the house unattended.
Been there, done that, not doing it again.

I told what I’ve been taking and how I have to change it around because I can’t take the “good stuff” during the week as they make me feel sick and drowsy and thats not good for work.

So he asked if he could make a suggestion…
An effective day time pain killer to take regularly throughout the day, something a bit stronger but long acting to take before bed so I get the drowsiness when I want it but enough benefits to get up me and out the house in the morning. A stronger anti-inflammatory and just one tablet to help protect my stomach from the harshness of these 3 together. I couldn’t really ask for anything better.

Unfortunately, “Call me Tim” is only on a placement at the moment so he won’t be around for long but I’m hoping he’s laid some kind of foundation on my record that means the next doctor who comes along can carry on where he left off.

But he did say something to me, that has stuck…
When I explained to him near the end of the appointment that I’ve seen countless GPs and he’s the first one to ask me what I want and actually act on it he said,
“All doctors will hear what their patients say… but there are few who really listen. The best doctors needn’t say much at all, because the patient will give you all the information you need”

And that is true. Most people will go along to appointments knowing what they want to get out of it only to be shut down by a doctor with a “I know best” attitude.

So my appointment with Dr Tim was a successful one. I’ve started my new routine of meds and I’m waiting for the rheumatology letter to come in the post. Hopefully, once I see the consultant I’ll get some proper management underway and see less of these horrendous flare ups!