An apology for being gone so long

I want to apologise for being gone so long. I haven’t done a blog for ages but I’ve had so much going on it my life. I’ve had lots with my health but also I’ve been moving house so it’s been really full on so I’ll explain a bit about what’s been happening lately with me.

I was recently referred to two London hospitals. One for my bladder and one for rheumatology. For my bladder I’ve been going to Guys to have tests done to find out why I have some problems with my water works and then I’ve been going to UCLH where I was diagnosed with hEDS. Back in April time I was diagnosed with hypermobility syndrome in Brighton after I put up a fight to be diagnosed with it. But I also told them I believed I had EDS or Ehlers Danlos Syndrome. All the symptoms I had matched up to it. I was also concerned because my Grandad had two major aortic aneurisms which killed him and his father my great Grandad also had an aortic aneurisms which he died from. No one knows why this happened it just did so I was concerned they may have had it too. I was diagnosed with hEDS a few months ago which means I have lack of collagen holding my joints in place making me extra bendy which explains why I was so amazing at gymnastics growing up. I now have to go up to London for some hydrotherapy, pilates and gym to see helps better. I also have been referred for genetic testing to see if it runs in my family. My brother and sister have definite signs of it so I need testing to check it out. Especially if it could save my family. While this has been going on I also moved house. My health was getting quite bad living at home and I was struggling to get up and down the stairs because they were so steep. It was also over crowed and so noises which was triggering my migraines. I now have a nice one bed flat which caused lots of stress in the process but I’m now settled.In October my niece turned one and so did my best friends twins so that was exciting too. October was a very busy month for me with hospital and birthdays and moving.

Now that I’ve moved and I have my own quite space I’m going to try and do some blogging more regularly and talk more about what’s happening in my life as they happen. I’m hoping that because I have a place to sit and relax on an evening when there isn’t much on the telly I can add an update on here instead of leaving it so long. Hopefully life will settle down a bit and won’t become so crazy although this is me we are talking about so that chances of that happening are slim.



Feeling alone in a crowd full of people

In 2012/2013 when I first start started to become sick I felt so alone. I had so many people around me but I felt so isolated. I was suffering with anxiety and depression but whenever I tried to talk about it I felt so alone because I wasn’t aloud to talk about my feelings. If I tried to talk about my feelings I was told to just get over it and that I was being stupid! The only stupid person here were the people refusing to listen and help me. I ended up bottling thing up which would lead to me snapping because I just couldn’t take it any longer.

But I had more than just anxiety and depression going on in my life. It was the start of me becoming chronically ill but no one knew at the time what was happening to my body. I started getting the most horrendous back pain (although take me back to those days any day). I also started bleeding heavily all the time and passing blood clots. Doctors couldn’t tell me why this was happening and so I was in hospital load having tests done all the time. I was having MRI scans and ultrasounds. They found cysts on the ovaries but didn’t think that was the cause to my problems.

Many times my GP would send me to a&e because I would see him crying in pain and he didn’t know what to do and knew I needed help. One time my Gran took me to hospital because my parents were working. She sat with me while they did some test and then they gave me a morphine injection into the bum because of the pain. They kept me in over night while they did obs on be but there was nothing clear going on so I was sent home. Another time my mum and sister took me to a&e late at night. I was in agony later that night they decided I needed to see the gynaecologist but they were at a different hospital which meant I had to go via ambulance by myself to this other hospital where I didn’t get seen until 3am.

I was visiting my GP quite a bit and I was having loads of time off work and college. People couldn’t accept this and thought I was being stupid and making it up. People around me who were meant to care didn’t show me support. I only had a few people who actually showed real support during this time.

Why when your surrounded by loved ones that you can feel so alone? I’m 2013 I was diagnosed with endometriosis and then over the years all my other illnesses have followed.

I’ve had many people want to put things behind them and move on and pretend like things are okay between us but it brings back a lot of memories. It makes it harder when they come up with excuses and try to pretend like you weren’t sick or that things were always fine. Just admit you were wrong and shouldn’t have treated me that way and should have respected me more at a time when I needed people in my life.

If you have someone in your life who is sick show them some love and compassion. Believe them and make sure they know you love them. Please don’t make them feel alone because it will destroy them at a time they need you the most.


To my best friend, i am Milly. To everyone else i’m ‘the sick one’

To my best friend, I am Milly. To everyone else I’m ‘the sick one’

I get sick of being sick. I get sick of being ‘the sick friend’, or ‘the sick family member’. To my best friend, I’m Milly. I’m her best friend who fights chronic illnesses and we are always there for each other. I’m hardly ever just a daughter, a sister, a niece, a cousin, a granddaughter or an auntie. I’m the sick one. The one that no one really wants to be around or actually wants to know how they are. I mean, why would they? I’m sick and that’s the story of my life. If they ask me how I am I have to lie and say “yeah I’m good thanks”. I’m not allowed to tell the truth because they don’t want to hear it.

No one wants to talk to me or see me anymore because of my illnesses. Everyone sits there talking about their lives, their boyfriends or girlfriends, their kids, their jobs or studies, their holidays, their nights out drinking and seeing friends and me? What do I have to talk about? A new illness that’s been added to the list, my pain getting worse, how I’ve struggled to get out of bed or leave the house recently, how my skin has flared with spots because my hormones are all over the place, or I have yet another hospital appointment or another surgery to add to the list.

Now if I’m with my friend we will sit there for hours chatting away about all sorts of things. Yes, we chat about how poorly we have both been feeling but we also can chat none stop about anything and everything having a proper giggle. But if I’m around family it’s a different story. They chat at me with all the fun things happening in their lives while I just sit there and smile and nod. Then I have the really uncomfortable part of saying about what new has been happening with me which let’s be honest is nothing.

I got into a stage of deep depression a few years ago, due to family problems I was having. Some nasty things had been said about me faking my illnesses, just being lazy and that I would be alone for the rest of my life and that no one would ever love me because I have nothing to give to a relationship. It really messed with my head and while I’m in a better place now I still have days when I struggle massively and I find it very very hard to be around some family members and go into panic attack mode.

One of the things I find really hard is the fact family want to all hang out with each other but I’m always excluded. Its “let’s go shopping”, “let’s go to lunch”, or “fancy coming around”. They all have things to talk about, things in common, but they don’t want to get to know me because I’m ‘just the sick one’. I have nothing but my illnesses to talk about. When I did my beauty course I was really hoping people would say to me “I’ll be a model for you”. No I didn’t hear that at all. I really struggled to find models with put more stress on me which I really didn’t need because I had started losing my vision and needed major eye surgery. I thought after I qualified, once I brought all my bits so I could do it from home they would help me out and have treatments so that I could share it on my page and get more practice. Again, that never happened. I had brought all this stuff for what felt like no reason. I find it hard watching them play happy families all the time. My illnesses make me feel so excluded and unloved. I never asked to be sick, it’s the life I was unfortunately given.

Sometimes I’ll cry at night when I’m in bed because it all just gets too much for me and I can’t cope with all my feeling. I can’t cope because I stay strong for too long because staying strong is my only option sometimes. All the memories come flooding back to me and my heart just breaks in two. I remember all the times I’ve been really sick in hospital and have not one text come through to my phone to ask me if I’m okay. I remember all the names I’ve been called by people who should never call you those names. I lie there and think how they are all happy in relationships and happy in life and how I’m single and how “no one will ever love me because I have illnesses so nothing to give to a relationship”. I lie there and think how different my life would be if I hadn’t got sick. Maybe I would have been a nurse by now, maybe I would have a great beauty business, or maybe I would have a family of my own to focus on. But I am sick so I will never know the answer to that.

I will always be that sick daughter, that sick sister, that sick niece, that sick cousin that sick granddaughter and that sick auntie but to my best friend I will always be Milly.



Its okay to not be okay but its also okay to be okay

There is a big stigma around mental health and even in 2017 people are still scared to talk about their own mental health for fear they are being judged. We have many people in the public eye talking about their own battles to help others understand it’s okay to not be okay. The most resent was Prince Harry talking about his struggles around the death of his mother and the Duchess Kate Middleton talking about her struggles around motherhood. I lived in New Zealand from the ages 13-17 and there would be adverts on the TV of the All Blacks rugby players talking about their battles with the black dog and telling others to speak up and ask for help. When I lived there at the time people  didn’t accept mental health problems. They told you to “harden up and get over it” or “you’ll be ‘right” was another popular one.

I had struggled with life in New Zealand and my parents had been trying to get me on anti-depressants for ages but I kept saying nothing was wrong. I moved at the wrong time. I went straight into high school out there and was bullied for being English. I really missed my dogs too. On days I wanted to go home and others I wanted to stay. I would have massive fall outs with family in England.

When I got back to England I went on anti-depressants. My ex told me that I didn’t need to be on them and after that I never felt like I could talk about my feelings to anyone. I always felt fobbed off. I would bottle up my emotions and then when I couldn’t take anymore explode and fall apart. Over the years, I’ve been on and off anti-depressants because I’ve struggled with my mental health a lot due to years of bullying and my physical health was on a downwards spiral. I’ve been bullied since primary school and it continue with every school I moved to. I also started having family members saying horrendous things about me which really messed with me mind. I felt like I was going crazy.

I was diagnosed with endometriosis on 30/12/13 after suffering in agony for over a year. I also was having lots of tests into why my back was so bad. But even with evidence to my family I was a liar, a drama queen and lazy. In 2014/15 my health kept getting worse and I couldn’t work I was losing friends and family were still being horrible which was causing me to breakdown. I was crying most nights, screaming, shouting, slamming doors, I would run from home and sit on the beach with a bottle of wine and a bag of sweets which caused me to put a lot of weight on. I just couldn’t cope with everything going on with my life.

In February 2015 I had bladder surgery for interstitial cystitis and I went back to work straight away. I worked in a supermarket on checkouts and I couldn’t pull the heavy things through. I was in agony and crying at work and went back to my doctor and got signed off with a bladder infection. The people I worked with started saying that I lied about having surgery, that I didn’t have an infection, that I didn’t have health problems and was making it all up. The worst bit was I found out my friends wouldn’t stick up for me and were even joining in with it. that made my mental health worse.

In march 2015 I went to New Zealand for what was meant to be a three-week holiday. I told everyone if I liked it then I was getting a visa and I wasn’t coming home. At this point I wouldn’t admit that I was depressed but looking at it now it was trying to run away from my problems which I learnt running away from them doesn’t work. You have to admit you have them and fight them until you get better. I went out there to see a girl who was my best friend at the time. It was her wedding and I was maid of honour. She went to work every day after I arrived and because she had moved to an area I didn’t know well I couldn’t leave the house. I couldn’t even go to the corner shop because I didn’t know how to get there. I started crying the whole time and my anxiety was sky high. I was shaky and having panic attacks. I was on the phone to my parents telling them I needed to get home. Five days later I was back in England which meant I missed the wedding. We don’t speak because of that anymore. I went straight to the doctor and told him everything. I was a blubbering mess.

On the 11/06/15 (my birthday) I had my second laparoscopy for my endometriosis. A week or two later I went into retention and had to have a catheter fitted. A few days later It stopped working I went into retention really badly. My dad took me to a&e and it took them ages to get the catheter changed. I was screaming in pain and my dad thought my bladder was going to bust because it was that bad. In the September I was diagnosed with fibromyalgia.

In October 2015 I then started losing my vision. I was told I had idiopathic intracranial hypertension. I was told without a lumber puncture I would go blind. People were asking why I wasn’t upset and my reply was “I’m use to things going wrong with my health this is my normal”. And it’s true this has been my life for a long time. Since I was 16 and I had tonsillitis and glandular fever badly. Then when I had them removed at 18 I had a bad infection. You learn to just get on with life. So I had my first lumber puncture but it didn’t work my eye sight was getting worse so I had to have a second lumber puncture. After the second I was very poorly. I was throwing up and then completely out of it so had to go to hospital by ambulance where I stayed for about 5 or 6 days. I don’t really remember much about it. My eyes were still getting worse so in December and January I had both eyes operated on.

Throughout 2016 I had more problems with my bladder, I was diagnosed with a bowel prolapse, I got more migraines, and my pain got a lot worse. My mental health had its ups and downs but was better than it had been in the past. I did CBT at the end of 2016 to try help with the problems I had around the bullying and the family problems which helped with my mental health as a whole but I will never forget or forgive people for the things they have done to me. I still get shaky around some people but I’m happy to just avoid people.

In 2017 I had to start using a crutch to walk with because my pain got too bad and I need a bath chair. I struggle to get up the stairs at home and I’m only 23 but I feel 93. I was diagnosed with chronic pain syndrome, chronic fatigue syndrome, hypermobility syndrome along with everything else I have going on in march of this year and I’m waiting for EDS testing. Even though this is happening I decided to do something positive with all the negatives in my life. I’ve decided to help others who are struggling with illnesses because I know how down it can make you especially when you have an unsupportive family.

I recently went to a pain clinic where I had physio and two medication review. They were awful. At the medication review I asked for patches but I was told they weren’t for people like me. They kept making out like I wasn’t in pain. I complained to management and then the physio told me I needed CBT. I told them I was not doing CBT again because I had recently done it and it was painful to do and I was in a great place mentally now. It also hadn’t helped my pain at all. In fact my pain is actually worse. At the second meds review I was told I was “messed up in the head” and had physiological and psychosocial issues and needed major mental health help. They would only help me if I went to Bath which is miles and miles from home for a facility which is for people with high care needs and mental health problems but they would do a bit of physio with me too. They said my pain wouldn’t improve because I was depressed. They told me I was messed up in the head because I told them that anyone who suffers in pain would take any pain relief they could if it gave them a better current life. It didn’t matter what it did in the future because we have life time illnesses so we would deal with the future when that arrived but we want a better now so that we can live our lives and do the things we wanted now while we are young.

I can talk about my mental health being bad and admit I was in a bad place so why would I lie about being in a good place now? If I was in a bad place I would admit it because I know now it’s okay to not be okay. I trained as a beauty therapist and would love to do that from home but I can’t because the pain I’m in. If I had social issues why would I be desperate to do that? They said I don’t leave my house because of my social issues when the truth is I don’t go out because I’m in agony. I speak to my neighbours often and I have one best friend who I go and see who has been my best friend though all of this.

What I don’t understand is why doctors, specialists and pain clinics are so convinced everyone who has physical illnesses have to be depressed. It’s actually okay to be okay. It’s okay to have physical health conditions and not suffer with depression just liked it’s okay to suffer with depression. I don’t believe depression makes pain worse because when my depression was really bad my pain was nowhere near as bad as it is now. They need better training and education from pain suffers to tell them that we don’t have to be depressed just because out bodies don’t work. Do they want us to be depressed? Do they think we are not strong? Are we not allowed to be okay? I think if we suffer in pain we are the strongest people going. No one would be able to cope with our level of pain. Think of the pain we walk around in everyday, everyone else would be in hospital with this level of pain.

I’ve come to accept my body doesn’t work and I’ve accepted that I will be like this for life. I’ve accepted I will never have a great family support and I will only have support from my one friend and the spoonie community. Coming to accept this is what’s really helped me with my mental health. I want to share my story to help others. I’m so open about my health and I love when I get a message from people thanking me for a post or asking for help and advice about a problem they are having.

So just remember is okay to not be okay but it’s also okay to be okay. If you aren’t okay, then please speak about it and get help.