Reflection

 I thought it was time to reflect back on my year. It has been a journey of alot of learning and I'm glad i hung on to see better things.

At the beginning of the year i had a mental health crisis. It was due to coming off anti depressants and starting back on my original one. However my body didn't seem to like it and sent me into a spiral of negative thoughts. My lowest moment was feeling suicidal and told to go to a and e. They couldn't help me there and my gp wouldn't see my until a couple of days later. Those were the longest days of my life. I begged the doctor to switch medications and then he referred me to the mental health service.

They wrote me a letter and declined to see me because i started this new 'miracle' medication. I begged for help and there was noone there. The people that should of helped me didn't. 

Luckily my new medication worked and i stopped another med which could of bern interfering. I've been mentally well ever since.

My year didn't really start until june, I don't remember much of the start of the year except for the mental health volunteers who I would ring at 5am because I wasn't sleeping. I also went to my local mind which is a mental health charity and have been doing a couple of their courses to leatn how to deal with my mood if it happens again.

Once i got my mental health sorted, it was time to deal with my nerve pain. I had to see a pain management specialist privately because the doctors were just giving me meds I couldn't even get physio. I ended up having nerve block injections in my spine which lasted a few months. My next step is to get the nerves burned. Hoping this will give me longer relief.

I've spent alot of the year really learning about myself and pain. Part of me thinks I haven't achieved anything but i survived and I didn't think I'd be here now.

Next year I really want to get fitter after spending three years not doing much exercise due to pain. I'm getting a new manual wheelchair so i want to build the strength up to push it.

So I just wanted to say I hope you all have a lovely Christmas wherever you are and how you spend it. I know it can be a difficult time of year x

On the Up

 Since my last post , things have improved massively.

I'm nearly 4 weeks on my new antidepressants and I've started living again. I remember that first week i went to see someone from the local charity MIND. i had nowhere else to turn as the mental health services had turned me down because of being on a new medication.

I went into the crisis cafe after realising there was no quick fix. Luckily i saw a lovely man who listened through my cries. I will be forever grateful to him in my time of need. He talked me through setting small goals everyday and i also applied for one of the courses they do.

I few days later, i came off another of my medications as it was possibly interefering with my medication. By luck I've been mentally quite well since.

Sadly I haven't heard a word from my gp. I was in a very dark place when i spoke to him and switched medication. No follow up to see how I'm doing. It's all very well talking about mental health but there's just not the services to help. I'm incredibly lucky to have supportive family and friends or I wouldn't be here.

I'm back in my craftroom and have been out abit with mum. Something I haven't done since last year. 

I still see my consellor who i have to pay for privately because i go through stages of grief with my other illnesses. I have Ehlers danlos syndrome and other conditions. I get frustrated that I can't stay awake all day and feel guilt that I'm unable to work. I go through stages of acceptance and stages of mourning what life could of been like.

Anyway enough of my chatting.Here's some embroidery I've been working on. I didn't get it finished in time for easter but like to think I'm doing it early for next easter 😂 It's helped me through alot of my mental health struggles x 

Unscramble my brain

 I thought I'd update my blog to get my thoughts out or rather unscramble my brain.

TRIGGER WARNING - Mention of suicidal thoughts

I don't really know what to write or where to start. So i will just write as my thoughts come. Last week and  for a few weeks prior my mental health hit rock bottom. I've suffered with mental health issues my whole life and it seems to be genetic. It was mostly under control with medication.

I changed medication in late 2020 due to chronic pain issues. This new one was supposed to help with that and depression. It took a while to get the dosage right or rather i never got it right. I was never far from my bed, which was more than usual.

I decided enough was enough in january when i just wasn't functioning as i was asleep all the time. I decided to stop taking them ( not advisable) but i was on the lowest dose. I lasted about 3 weeks until i had to go back on my previous medication. It worked for about 2 weeks then i was met with crippling anxiety and suicidal thoughts. The doctor upped the medication and i lasted 6 weeks. Again great at first but slowly i was sleeping more and more. But now it was depression setting in and i didnt want to do anything.

Then the panic started, I couldn't sleep, I couldn't sleep. I was pacing the house in my wheelchair. It ended up with me researching suicide methods for days on end. I was in a very desperate place. 

Luckily my friend took me to a and e who weren't a great help but they listened and tried to get my gp appointment sooner. My gp sadly wouldnt see my until two days later. Luckily theres a telephone support for mental health so I'd be ringing them at 5am just to talk to someone. 

My gp changed my medication after abit of reluctance. I have now been on it for 7 days. Its been a very long 7 days. I  have so many worries, what if it doesn't work, who will i become. My whole routine has changed because I'm no longer asleep. I don't have a routine. 

I'm writing this blog to explore ways of trying to find myself again, finding what i love again and how to live x 

Handmade bag and tutorial link

I've recently got back into sewing again and thought I'd show you what I've been making. My fabric stash is overflowing and I really wanted to put it to good use. I found some fabric that I'd brought ages ago and decided to make my first handmade bag. 

The bag is supposed to have side pockets but i ran out of fabric so I didn't put them on. It was quite easy to making considering it was my first bag. Here is the link to the tutorial by debbie shore x 

https://www.youtube.com/watch?v=fDN6B9ro9ns

Very late rehab update

Wow the world has gone abit mad since the last time i posted. Yet again i was meaning to update but it took me a while to recover from rehab.

So rewind back to the 10th feb. I arrived at rehab to do my three week stay. It had taken alot for me to get there and be mentally prepared. I was then told i was only supposed to be there for one week instead of three weeks it said on my letter. A lady had marked the wrong stay on my letter. She did apologise but as you can imagine i was devastated. My week was for an assessment to see if I could do the three week programme.

However i was determined to get as much out of it as i could.i was very lucky in that ive previously done the 3 week course. My stay was tailored to my needs which was fantastic. I'll see if i can remember what i did 😂

Unfortunately breakfast was at 7.15am. I think the lights went on at 6.30am. Yikes. It was strange as we didn't need to be anywhere until 9am. So off we all went to a physio room where we had mindful movement. I nicknamed it stressful movement because it was a combination of someone talking, moving the body and listening to music. I have the most uncoordinated brain so this was rather confusing.

Next was physio or o.t. We worked either in the gym or going through how to pace during the day. When i first saw my o.t and physio I explained my main issue is sheer exhaustion. The physio then suggested discussing it with the phycologist as with pain, alot of people don't do things because of being afraid of it. I've always been the opposite and will fight it every step of the way and try and do things despite this. I saw the phycologist and she was so nice and congratulated me on doing so well and thinks i should do motivational talks 😂 mmm maybe not.

Anyway back to my schedule. We had lessons on posture support, smoking- I don't smoke, wellbeing and i forget the others. We also had recreational activity where we went in the gym hall and played badminton and table tennis.

By Wednesday i was totally done, I'd given it might all so was counting down the days to go home. 

I had a meeting on the thursday with my o.t and physio . They said and i agreed that it's just to much for my body to do the three week course. I was just getting more and more unwell as the days went on. I learnt so much though and continue to put into practice what i learnt. 

It was weird seeing other people with the same condition but we have different symptoms. Most people's main issue is chronic pain but mine is exhaustion,which means I'm only awake for a certain amount of hours during the day. I made me accept that this is me and work with it instead of against it. I'm grateful i can still do things , it just takes alittle longer. 

On another note, i learnt to use procreate on my ipad in rehab 😂 these are the designs i did. Sorry its a long post x 

The start of my journey

Lying here on the ward in rehab, I reflect on my first day. My mind whirls and is overwhelmed with information, possibilities and hope.

My stay didn't start as I had hoped. My letter said I was here for three weeks but it was a mistake and I'm only here for one week. The hope of trying to change my life dwindled in that second, the second I felt like the rug had been pulled out from under me. I could of completely given up in that very moment but I've fought to hard to stop trying. Ok so I won't be here for three weeks but I'm incredibly lucky to have another chance. I can see the negative or the positive. I chose the positives.

My one week has been tailored to me. I will learn how to pace with my condition so i stop wearing myself out, learn new exercises and i will have the input of a health phycologist. I've been searching for one for years but they don't have them in my area.

So now as i close my eyes to sleep and the day descends in to darkness, i will wake tomorrow to start a new page of my journey.

Chronic illness acceptance

Today I had a reality check. It's time to stop searching for a magic pill to cure my chronic illnesses and accept them as what they are.

I didn't realise that I haven't been coping for a while since I'd tried some new medication. Mum came to the rescue today as my brain was so foggy that i just couldn't figure out how to have a shower.

I've fort my conditions for years but what I haven't done is accept them. This is key to any chronic illness. You have to work with it or it will bite back 10 times worse. 

Although my daily quality of life isn't what i want it to be, i only realise that its actually not to bad after I've tried a new medication that wrecks my brain and body. I'm always chasing a new treatment to help my fatigue and allow to me be 'normal' but the grass isn't always greener. 

So after 16 years it's now time to work with what i have. I was basically born with chronic fatigue so it's something i will never not have. Although my consultant is hopefully going to test me for sleep apnea as it's common in Ehler's Danlos syndrome.

Next week i embark on a new adventure. I'm off to rehab at Stanmore for three weeks. I did the course previously about 4 years ago but it just wasn't the right time for me. This time I'm ready to get the most out of it.

I found it very demanding before as its a busy schedule with lectures, physio, swimming and phycologist so I will just have to take rests when i can. Last time i had to skip a few classes so i could  rest.

My goals are also different this time. I'm not going there to walk learn to walk again. This is a massive thing for me as doctors in previous years have seen it as priority, although I've only ever been told my best hope is to stand. I had a chat with the physio that i saw last year and I'd burnt myself out because i thought i had to learn to walk again. It was actually pressure from other people that i had that in my head. The physio said one thing that changed my perception' you can live a perfectly normal life from a wheelchair. ' From then on my priorities changed.

I have these conditions but i want to be the strongest i can to hopefully help the fatigue and pain as we need our muscles to take over from ligaments. I will never been bodybuilder strong but i can be strong within my own limitations. I also want to learn pacing techniques as I'm always in the boom and bust cycle which is more busted at the moment. My next goal of acceptance is to also accept that it's ok to put myself first rather than trying to please other people. I also need to stop striving for the life i once wanted. I can still enjoy life it will just be different path and that's ok with me.

Sorry this turned into a rather long post.

Have a good week everybody.

Love Hayley