Sunday, 26 May 2019

#meandmyME Week 4

Monday 20th May // Day 20: Current view

This is the view from my bed as I'm summoning up the energy to try and get out of bed in the morning. I'm slowly elevating myself upright and I have things to hand on my such as my laptop and iPad, medication, baby wipes and then on my bedside table I have a tumbler of juice and snack bars such I be too unable to get downstairs to the kitchen and a box of other medication e.g. migraine meds, anti sickness meds, inhalers etc. The blinds are still closed hence why there is a pink haze and putting any light on is too much for me.

Tuesday 21st May // Day 21: Assessments (of any kind)

In January I had an updated home Occupational Therapy assessment which led at my house and any difficulties I have within the house and putting inlace any aids or adaptions to help make things easier for me. From that I got a mattress elevator which allows me to sit myself up and lay myself down much more easily. I also got a bath lift which as a lift does it lowers me into the bath and raises me up (though it doesn't magically get me out of the bath).
I've also been struggling and trying and failing to get assessments to help me get a care package so one day I can move out and live on my own.
I also have routine assessments like medication reviews and blood tests etc.

Wednesday 22nd May // Day 22: Help

My Dad helps me out a bit such as if I need an arm to steady myself when walking, preparing and helping me take my medication, washing my hair for me, cooking, helping me up when I've fallen etc. 
I also have carers which help me with anything from personal care to helping me with my my medication, to running errands or going to appointments or just going out for tea and cake.
(I can't leave the house alone so being able to leave to house with my carers for a couple of hours a) makes me feel safe and b) it enables me to leave the house and get a change of scenery and gives be back some independence).
My my wrist I also have something called a CareLink which has an impact detector so if I fall it set off an alarm or I can press the button and it will put me through to someone and I can talk to them and then can arrange for help to come round if need be or call my Dad or Mandy to let them know if I've had a fall etc.

Thursday 23rd May // Day 23: When I wake up

This is usually a drawn out process.
My first alarm goes off at 9am (earlier if I have an appointment, but I try to get appoints in the afternoon). I then lay in bed for a while trying to wake myself up. I take my 9.40am meds then my 10am meds. After my 10am meds I aim to get out of bed. With my mattress elevator I slowly sit myself up so my dysautonomia and POTS can adjust itself and my tachycardia and low blood pressure from going fro lying it sitting up doesn't get set bad.
I then get up, shuffle downstairs and get some breakfast. I then have a rest and watch TV or go back to bed

On a bad day I just stay in bed, I may have the cereal bar I keep next to my bed I'm I'm feeling okay, then I will just go back to sleep.

Friday 24th May // Day 24: Coping/Support

Living with M.E. is really difficult and because of the isolation you don't have a wide range of people in your life. You have good and bad days emotionally with your resilience.
My Dad is supportive, I also have my pen pals and my faith.
To help cope I have things that distract me and things that I find soothing.

Saturday 25th May // Day 25: Big wins

I think my biggest win since becoming ill (even though the M.E. wasn't diagnosed when I first started) was completing my home study Foundation Diploma in Art & Design which will really help me when I'm well enough to go back to University as I now have a balance of art and science based educational qualifications.

Sunday 26th May // Day 26: Describe M.E.

Describing M.E. is really difficult to sum up. Living with M.E. is life living with your life on pause and you're just waiting for your life to get back on track.
You're tired all the time but sleep doesn't make it any bette, but you need to sleep and nap and rest a lot. And when you're tired your brain is all foggy and you can't remember things and it affects your thinking and you can't process things is and everything is slow. And because of the brain fog your brain losses track of things. 
But even when you're exhausted you get insomnia at night and if you do manger to sleep well you wake up feeling unrefreshed.
Sometimes even just lifting your head is too much effort.
And your muscles really hurt really badly. 
Then you get this pressure in your head so you get headaches and migraines a lot. 
Sometimes it's like being really really drunk.
Because M.E. is episodic you can't predict how you will be to an extent. Like you know you'll have PEM but you don't know how bad the payback will be. 
There's also the hypersensitivity. Light and noise are painful - even the sound of your own voice is too much sometimes; smells can trigger migraines, and one bad days even just gentle touches like my duvet hurts. So sometimes you have to lay in the dark and silence.
Walking is difficult, it's too tiring and painful sometimes and it takes too much energy.
You need to be really careful not to do lots of things. You need to be really careful and do one thing and rest.

Friday, 24 May 2019

New GP and Complex Care Team

I was having a heck of a lot of issue with my old GP which I didn't feel able to voice and issues mounted up.

Then I got an independent advocate and I was finally able to feel like I had a voice about my care and what was and wasn't working.

My advocate arranged a meeting with Practice Manger of my GP surgery and it was a really positive meeting.

The Practice Manger was going to investigate a few things and I also swapped to a different GP. 

New GP

This week (Wednesday) my advocate and I went to see my new GP; even though we're still getting to know each other my first impressions where good. I felt listened to, he was honest with me, he explained things to me, he wrote things down for me. He explained that unfortunately we lack services locally, which I already kind of know and he said I sort of fall through the gap as my health isn't temporary but I've not got a terminal illness so I'm not eligible for hospice care even though WHO (The World Health Organisation) has changed the definition of palliative care from is just being terminal; end-of-life conditions but to now include serious chronic illnesses.
"Traditionally, palliative care towards the end of life has been offered mostly to cancer patients, but must now be offered for a wider range of serious illnesses" - WHO Palliative Care
But my GP did say that he would have a look to see if there was anything out there for me and he would also read through my notes so he can familiarise himself with my case. 

Unlike my old GP who just sort-of left me my new GP now want to see me every month for half-an-hour to catch-up and keep and eye on things and see how I am.

Hopefully as we get to know each other I hope I will start to feel more supported from a primary care level and it will mean I will get some care in-between my London appointments.

Complex Care Team

A long while ago I was referred to to Complex Care Team and very little happened. When my advocate got involved, like with my GP, she stated to get my care sorted and moving. After that I spoke with my key worker twice and she organised a MDT (Multidisciplinary Team) meeting. Usually with them I'm invited but today was a 'professionals only meeting'. 

My advocate could only briefly update me as she had another meeting but they're going to have monthly meetings to keep my care flowing and hopefully they can arrange it so my new GP can attend the next meeting.

The GP practice is going to call me every week to see how I am and my mental health care co-ordinator is going to call me weekly too.

They're also going to keep in regular touch with he euro rehab centre in Leeds to ensure that I get an assessment for there as soon as possible and then they will mean they can start arrangements for getting me a bed (but I'm trying hard just to take things one step at a time).

Also, they're going to start arrangements for putting together an Advanced Care Plan for me, so when people like the paramedics turn up, or I go into hospital there's detailed instructions of what needs doing and how best to care for me and my care needs and wishes.

GUEST POST by Kate* for EDS/HSD Awareness Month 2019

My dad has always been my hero. 
Every night I cried out in pain, he was there, with my hot water bottle and hugs.

I think this is my earliest memory of my symptoms, but my parents had shared concerns about my joints with doctors as soon as I was born. My shoulders were strange, and I always had pain in my legs and back. Of course, they were told I was fine, "it’s just growing pains" etc.

Growing up I performed my party tricks to everyone. My fingers could bend all the way back and I’d pop my shoulders out. "Ewww gross" people would say. I quite liked being a bit different.

At 18 I had agonising pain in my side, and my rib was sticking out. After a bone scan I was told it was just extra cartilage, nothing to worry about. 12 years later it's believed I actually have scoliosis.

I could list countless, missed opportunities for a diagnosis, but that would go on forever!!

It wasn’t until I was in my late 20s that I began my own research. Things just weren’t right. I had multiple diagnosis from adenomyosis to lymphocytic colitis, and I was in constant pain. I just couldn’t understand why I had so many issues. Then I stumbled across an article about Ehlers-Danlos Syndrome, it quoted ‘If you cant connect the issues, think connective tissues’. Lightbulb moment!!

It was a perfect fit! Joint issues, gastrointestinal issues, gynaecology issues etc. I cannot express how happy I am that I had found this! That was when the second leg of my journey began. My GP sent me to rheumatology, where I got a hypermobility diagnosis (still fighting for the EDS). I’m also under cardiology, waiting for a diagnosis, at the moment it’s suspected PoTS.

My health has taken a significant nose dive in the last two years, and I am in the process of finding suitable mobility aids to enable me to move around more.

But hold on... I’m only half way through this journey, so there’s no light at the end of the tunnel just yet.

However, I am hopeful I will get to a good place at some point in the near future, where I’m receiving the right treatment and support.
I love the NHS and cannot thank them enough for their hard work, but I can’t help but feel sad and slightly angry for the failures along the way. I honestly believe my health would be better now if I had received a diagnosis as a child.

The best advice I could offer anyone battling health conditions is persist! Keep pushing until you get tests and support.

I hope EDS becomes more recognised throughout society, and I will definitely do my best to spread awareness, so children and young people with EDS are not left behind.

Wednesday, 22 May 2019

Guest Post by Cheyanne for EDS/HSD Awareness Month 2019

I once spent 8 months out of one year in the hospital due to complications from Ehlers-Danlos Syndrome and its co-morbid conditions - Mast Cell Activation Disorder, Dysautonomia, and Digestive Tract Paralysis. The idea probably sounds preposterous. Most are unable to fathom waking up in a hospital daily, seldom breathing outside air, and the fact that 4am blood draws and vital checks become a normal routine. Arriving home after all of those months was an adjustment. I did not know what to do when the extent of a day’s drama was no longer watching medical professionals bicker at the nurse’s station outside of my window. Still, I cannot help but wonder if it had to be that way. 

Ehlers-Danlos Syndrome is a degenerative genetic connective tissue disorder. With the progressive nature of this condition, worsening with age is almost inevitable. I have had symptoms of EDS since birth, but I did not receive a formal diagnosis until I was 14. That is 14 years without knowing the origin of my symptoms, and 14 years too late to spare me from damage that could have been prevented. 

An early diagnosis is imperative to ensure you care for your body in such a manner that does not add unnecessary progression. Had I known about Ehlers-Danlos Syndrome sooner, had I been sent to a geneticist at the first signs of random arm dislocations and gastrointestinal distress, perhaps I could have avoided the complications I have experienced - or at the very least, lessened the severity. I would have known to play sports but to wear the necessary braces to stabilize my joints. My team of doctors would have understood not to prescribe medications that are natural mast cell degranulators, as my EDS leaves me susceptible to provoking a cascade of life-threatening reactions from secondary mast cell disease. And I could have catered my diet for as long as I could to hopefully delay the intestinal failure which required a large portion of my bowel to be removed. 

To those just diagnosed with Ehlers-Danlos Syndrome this awareness month, it is my desire to convey the importance of caring for your body early on, yes, but not forgetting to live in the process. Doing so is a balance between maintaining a thriving physical state without compromising living life to the fullest, as well as finding that equilibrium amidst chasing the greatest of our heart’s desires without making ourselves sicker. 

Never repress your dreams out of fear. If you do, what is left to fight for? 

A link to Cheyanne's blog is: Hospital Princess

Tuesday, 21 May 2019

GUEST POST by Sage for EDS/HSD Awareness Month 2019

My name is Sage and I was diagnosed with HSD (Hypermobility Spectrum Disorder) in 2017. Since then, I’ve developed over ten different symptoms and the pre-existing ones have gotten severely worse.

My current day to day life is a real struggle, my day starts from anywhere between 6am and 5pm. This is very unpredictable as it all depends how I felt the day before such as; if I did any strenuous exercise, if I slept well or decently that night or if I was up crying and screaming in pain all night. The latter has been my ‘usual’ for the past few weeks. 

My partner and I usually wake up together and he makes us breakfast. This had always been the case as my body would be too stiff to move when I first woke up or I would be too dizzy and getting up to do lots of standing would increase the risk of me fainting or injuring myself.  

After breakfast, I would either work on University assignments, as I am completing a Bachelor degree online, or relax in bed. Again, this all depends on the night and morning I’ve had. Everything I do is very dependent on those two factors. Something else that I have to think careful about is what I plan to do the next day. We don’t do anything or go anywhere without a plan. It’s risky business when a simple bus ride can turn into my worst nightmare. Which is being stuck in a suburb far away from home feeling dizzy, in pain and exhausted and the only way back is to get on another torturous bus.

Completing assignments seems to be one of the hardest things for me right now. I experience intense, daily migraines and the added screen time tends to make them a lot worse. I’ve been recommended migraine glasses and other costly substitutes but living out of home, unemployed with no government assistant makes getting help for any of my symptoms very difficult. 

However, I was able to get a wheelchair with a little dip into my savings at the start of this year. This has proven to be extremely helpful for going to the shops, monthly markets and doctors appointments. It is definitely very hard to be independent and apart of the community when you need to use a manual chair to get around. I have tried going for little walks down the road to the shops but that proved to be very difficult and something I’d prefer to never do again.

My joints and muscles tend to ‘give up’ when under constantly pressure so standing and holding things is also out of the equation. I spend a lot of my time either sitting or lying down, and to some that may be the dream but to me, it is frustrating and incredibly boring. 

The rest of the day tends to be pretty repetitive. I try to ‘spice things up’ by attempting to film a YouTube video for my channel that I just started using again, or maybe work on my business that I’m planning on launching in July. These creative projects keep me excited and motivated throughout my flare ups but it is heartbreaking when spending twenty minutes or more on something makes me double over in pain. 

Although my partner is incredibly supportive, my family is not. My mother has a misinformed opinion that the reason why I am in so much pain is because I’m not drinking enough water. Most nights she will call me, as I live in another state, and she will never forget to mention that this would all go away if I increase my water intake. I believe that it does help the intensity of my migraines but other than that I don’t see many things changing. My father on the other hand is a lot less forgiving. He believes I should get a job and that will not only solve my financial issues but also my health, so I took his advice and now I have an interview next week. This position is full time and it is about one hour travel by bus away from my house. Don’t be alarmed, we live very far away from the city so everything is about that distance away. Plus the state I live in is so small it only takes one and a half hours to get to the other side of the state. 

Although I’m very excited about the job, I am also incredibly nervous. So many things could go wrong when I’m alone but with my father’s stern words I feel like I need to get better and ‘suck it up’. My background and culture isn’t very accepting of illnesses and despite me showing my father the results to many specialists appointments, he refuses to believe that there is anything wrong with me. He believes I am making his all up to get money from the government. I feel incredibly alone whilst on the phone with him as I feel most of our calls focus on my pain. It’s like me verses him and not us verses the problem? I’m not sure if that makes entire sense but I just wish he spent more time and energy supporting me and less time lecturing and giving me additional stress. These stigmas about illness in my family is what prevents me from opening up to others. It took my many painful dates to tell my partner about this side of myself and I felt ashamed or embarrassed. I felt as if we are not equal because he takes on a lot of physical tasks and chores. 

Although it may seem that way, I understand now that it really isn’t. I provide a lot to our relationship and home together. I’m the person who plans our meals for the week, researches vegan and waste free alternatives and manages our finances. I clean when I can and although we’re still unpacking our boxes, I am working hard to making this place our home. 

If you can relate to this post; please make sure to reach out to family and friends. It’s important to stay connected with the ones you love and please try not to isolate yourself! 
Thank you for taking the time out to read my post, it was honestly a privilege to write and I hope this helped you understand a bit more about HSD!


GUEST POST by Allison for EDS/HSD Awareness Month 2019

Ehlers-Danlos Syndrome is a connective tissue disease that can cause excruciating joint pain, dislocations, easy bruising & tearing, & an endless number of co-morbidities, or conditions that go along with EDS. 

EDS causes a defect in collagen, the glue that holds your body together. If you can imagine, having defective collagen can affect any and every system in your body negatively. 

Everyone with EDS is affected differently - some may live their whole lives without realising they have EDS, others can have life-threatening consequences. Unfortunately, most people, including many doctors, don’t know about EDS, which can lead to judgement. If you know some with EDS, the most important thing you can do is show understanding and compassion. It’s a very difficult thing to live with, and a little kindness goes a long way. 

Monday, 20 May 2019

GUEST POST by Telle - 'My journey though chronic illness'

Hi! So when Naomi asked me to do a guest post for ME/CFS awareness month and EDS, I asked what she wanted me to focus on and she left it up to me, so I thought I’d just tell you a bit of my story.

I am currently 38 years old and I’ve been diagnosed with:
  • ME/CFS - Myalgic Encephalopathy/Chronic Fatigue Syndrome 
  • Fibromyalgia
  • Ehlers-Danlos Syndrome type III 
  • I also have some EDS related illnesses including POTS (Postural Orthostatic Tachycardia Syndrome) and Mitral Valve Click Syndrome (Barlow’s Syndrome), NMH (Neurally Mediated Hypotension) and Gastroparesis
  • Migraines/severe headaches
  • I also have a few mental health issues
Today I’m going to write focussing on ME/CFS and EDS and my journey throughout the years. 

ME is a neuro-immune illness and is impacted at the mitochondrial level. 

On the 15th of February 1995 I was taken for assessment to the specialist ME/CFS clinic at the Royal Children’s Hospital in Melbourne, Australia. 

From grade 6 in 1992 until the end of my first year out of high school, I went up and down significantly with crashes and periods of semi recovery. I was never “great” but I got to a place where I could semi function until I would “crash” again for however many weeks or months. 

By 2005 I was looking for an Adult ME/CFS specialist to manage my condition. It took a long time, for me to trust him and him to trust me, but now we have a reasonable working relationship.

It became clear that the pain was not going to go away and that I needed help. From around 2007 onwards I saw a Pain Specialist and I was also diagnosed with Fibromyalgia. 

In 2015 I was diagnosed with EDS Type 3 (aka EDS - Hypermobility Type). It also explained the POTS and gastroparesis and other symptoms.

My pain just got worse and worse and worse. My second pain specialist got me into a Pain Clinic. 
I made it through all 12 weeks. My third pain specialist (who is my current one) is awesome. He listened to me and he knew what EDS was and he didn’t hesitate to give me medications I needed as a trial. 

So this brings up a major topic I wanted to discuss… doctors! I’ve been fairly blessed because I’ve been able to find good doctors through referral of others and just pure luck. 

Good doctors make a world of difference. I’ve had some crap doctors and doctors I didn’t understand, but when they’re willing to communicate and they’re willing to be there for you, then its so much easier to trust them, be trusted by them and get the help you need. It is also okay to tell them that you’d like to get a second opinion just in case they have other ideas or are more experienced.

At the moment I’m looking at getting a second opinion on what I can do for my ME/CFS so I can see if there are any treatments that I could have that might improve the quality of life.

Even with medications, it doesn’t fix everything, I’m still exhausted every day and ME/CFS sleep is not restorative. 

So many people who have ME/CFS have pain; it does not automatically mean you have Fibromyalgia and being hyper-flexible does not always mean you have Ehlers-Danlos Syndrome or Hypermobile Spectrum Disorder. 

The reason I advocate for a 'whole person' approach is because these illnesses are a whole of body system and that includes the environments, the triggers for what set off the ME/CFS or the EDS gets worse for some reason. But I've learnt a long time ago that I wanted to live my life and not be identified as 'the sick person' all the time. 
The fight is to live not just be alive.

If you’ve made it this far and you have questions just ask and I’ll keep an eye on the comments and try to answer whatever Naomi can’t in her brilliant knowledge (seriously guys she’s amazing), but one last thing. I asked my friends what they’d want to know about how to help people in this situation, the easiest suggestion is to just ask and be a good friend. 

Always and forever,
Telle (@cracks_in_porcelain on Instagram)

Living with HSD // EDS/HSD Awareness Month 2019

May is EDS/HSD Awareness Month.

I wanted to do a post on HSD as there's so much out there about EDS (Ehlers-Danlos Syndrome) but little about HSD.

The zebra is the symbol for people with HSD and EDS as we are 'medical zebras' because doctors don't automatically look for conditions like EDS or HSD.

One of my illnesses is Hypermobility
Spectrum Disorder. It's largely an invisible illness. You might see me in my wheelchair, walking with crutches or the braces and splints that I wear but you don't see all the other symptoms and complications that I'm having to deal with.

HSD is caused by faulty collagen. Collagen is the glue of the body and because mine is faulty is causes my joints to be lax and as a result the sublux or dislocation and my organ are too stretchy so I have problems with different organs such as my digestive system, heart and bladder.

It's an incredibly painful condition and because my joints hurt all the time and every movements exacerbates the pain because my joints are so lax. Even putting on a t-shirt or reaching for a plate can cause a a joint to sublux or dislocate! It's also tiring because my body is constantly trying to repair itself.

I sublux/dislocate joints multiple times a week, sometimes in a day and it something that I find never gets any easier to deal with.

On top of that are the complications that I have secondary to my HSD.

I have gastro issues so I have 'delayed gastric emptying' which means that my stomach empties much slower causing me to feel constantly full like I've eaten a 5 course meal even though I only eat small portions; it also causes me to feel nauseous all the time, sometimes leading to episodes of vomiting. Them I have intestinal dysmotility so like with my stomach my digestive system is sluggish and doesn't work as well as it should causing discomfort, cramping and bloating (which doesn't help when you already have IBS).

I also have baller issues which I find quite difficult and it's not helped by my neuro disorder. Because of my faulty collagen my organs are stretcher than normal so my bladder is stretchy which causes it to leak so I have incontinence. This is quite emotionally difficult to deal with and one I hope my specialist can find an answer to.

As well as that I have dysautonomia which is also referred to as autonomic dysfunction so the body's automatic functions like temperature control, blood pressure, heart rate ect doesn't work as well leading to me developing orthostatic intolerance and POTS (Postural Orthostatic Tachycardia Syndrome).

I also have TMJD with is a problem with my jaw joint, again because it's so lax just eating or taking can cause it to slip out of place. Even when I'm just sat watching TV my jaw hurt.

I want to raise more awareness of HSD as there's lots about hEDS and EDS but little about HSD and often HSD isn't taken as seriously as hEDS (hypermobile Ehlers-Danlos Syndrome). I wrote a post about this which you can find here.

HSD and my other illness all interlink so sometimes it can be hard to work out what's causing what symptom or for example I'll have a seizure (unrelated to my HSD) but it will cause my joints to sublux or dislocate exacerbating my pain levels.

I live in constant pain; some days I can cope with it and the times the pain will be so immense I just want to curl up and cry.

Other symptoms of HSD is that I injure more easily so I'm forever covered in mysterious bruises. I also have poor vein access - I have on 'good' vein and if that's gone then it's become a challenge; I've had annuals inserted into all sorts of odd areas and often after on blood draw or medication amiss the vein will blow and then it's a hunt for another IV access point.

Another really random symptom of HSD is that local anaesthetic has no effect on me which completes things like when I go to the dentist.

Medication helps me and keeps me functioning and I've found physiotherapy helpful. I'm waiting to start a specialist pain management programme and once my pain is better managed I can go on a hypermobilty exercise programme at UCLH and I'm looking forward to giving hydrotherapy a go. I also find very gentle yoga help me stretch but I have to be super careful not to over do it and cause my joints to sublux/dislocate. As well as medication and physio and yoga I find heat, deep breathing and my TENS machine helps. Occupational therapy has also helped me too.

Once my seizures and other illnesses are better controlled I hope to do an inpatient rehab program for patients with chronic pain and hypermobilty disorders, but I try not to look too far ahead. 

I try to just just take each day as it comes and deal with the challenges that present that day.

I feel very lucky to be under the expert care of specialists at UCLH who within their own field have an interest in EDS/HSD. The travelling is a pain but it worth it.

A few years back I saw my local rheumatologist who told me that EDS is a condition you grow out of! I firmly believe that in cases of suspected EDS/HSDpatients should be referred to EDS/HSD specialist rheumatologist to ensure patients are given the right diagnosis. It's great that there's now more awareness of EDS, especially hEDS but I wonder if in some cases people are seeing professionals like their GP or local rheumatologist who lack to expert knowledge of EDS and HSD and are misdiagnosing EDS when people may have HSD instead or may just simply be hypermobile. (You can be hypermobile and not have a hypermobilty disorder - just look at dancer, gymnasts and athletes.) Especially with the new 2017 EDS classification some GP and rheumatologists may not be aware of this and I know in some cases people are still now being diagnosed with the old classification of EDS Type 3.

Helpful Links:

Sunday, 19 May 2019

One Second Every Day - May: Week 3

Monday 13th May

Really struggling with my symptoms lately which is getting to me emotionally; especially knowing that I will always be ill with no end in sight.
I had my Bluebird visit. It's so nice that I get on well with my carers and Bluebird try to match carers not just on care skills but also personality and they try to give me carers around my own age and we can chat about normal every day stuff as well as my carers being professionals and helping an supporting me.
I've had a few seizures today so I've felt quite tired and it's not helped with my increased pain and fatigue.

Tuesday 14th May

Still struggling with symptoms. Spent most of the day so far laid on the sofa watching Victoria.
Today's been my usual sofa day (typical day with chronic illness). I managed to do one module of college work. I'm getting a bit stressed that I'm falling behind but if needed I can get an extension.
I called the GP surgery, I couldn't get a telephone appt today and the receptionist spoke with my new GP and he wanted to see me but it will depend on whether I can get someone to take me tomorrow.
Now funding has been approved for Leeds (finally and YAY!) I tried to call Professor Edwards sectary but I couldn't get through so I sent and email. I also called Leeds and spoke to one of the nurses on the rehab unit and she was so lovely and told me a bit about the centre. Unfortunately she could tell me how soon I will get a letter for a pre-assessment or how soon it will take for me to get a bed as they balance out the needs of the patients on the unit but it was lovely to talk to her all the same, and speak to someone who 'gets' M.E. and FND and how frustrating it's been for me with my GP taking so long to send of the funding request (my old GP) and then the lack of support and services and how I only have Professor Edwards and how locally when I go to physio they don't understand the PEM crash I experience after etc.
I had a ½ hour Bluebird call. Even though it was 2.45pm I still hadn't had any lunch as I was too tired so my carer made me a sandwich and we had a walk for a few minutes before the pain and breathlessness flared up but it was nice to be in the sunshine. I just thought a mini walk might help stretch my body after being laid flat mat of the day. 
When she left I had a nap on the sofa (tired tired to go upstairs to bed) until Dad and Mandy got home after 5pm.
Apart from tea I've spent most of the evening laid on the sofa. I did manage 10 minutes of colouring a postcard.

Wednesday 15th May

Had an appointment at Orchard Barn for Reiki. Thought I'd just try it out to see if it helps relax me and I did really relax which helped take my mind of the pain.
Mandy got called into work and Bluebird was short of carers so Beth my step-sister was going to take me to the Drs as I wasn't feeling great but Beth had to cancel last minute and I couldn't get the GP to call me at my appt time which was stupid as I had the appt slot to see him so I went and my myoclonic seizures where constant and my speech became really stuttered and slurred but the GP was great. I've started seeing a new GP. He was okay but he didn't address the issues to which I made the urgent appt for which was frustrating as it's another week of worsened symptoms, pain and brain fog. I'm seeing him again next week with my advocate so hopefully she will help me get things sorted. He did however say that he won't mess with my meds and I got my issue with my Promethazine sorted so I can finally say bye to the dizziness and nausea that's flared up since the GP practise messed up and stopped issuing it because of an old message from UCLH (it's a long story). I then had a tonic-clonic seizure which is why I needed someone to take me. I felt upset and frustrated that I couldn't even go down the road to the GP practise on my own without something happening.

Thursday 16th May

Had my favourite carer today back from her holiday (I love all my carers but this carer is my primary carer and does the vast majority of my calls) we laughed when we compared arms at her tan covered to my vampire pale skin.
We got to the first shop and got my wheelchair out the car then realise that we had forgotten my footplates so we had to go back home and take two. We went to Home Bargains and The Range looking for pretty plant pots but the selection was very limited but I did mange to find one pink one in The Range which goes nice with my grey-lilac coloured plant. I've also ordered a zebra plant pot off Etsy. I just need to find a smaller pretty plant pot but in my plant pot search I saw some crochet ones so I might try and find a pattern and make one myself.

Friday 17th May

Had a good day raising awareness and understanding of M.E. again. First off was a phone call with a staff member from Action for M.E. working on an article together and then a journalist was looking people with M.E. to answer some questions for an article she was doing.
The rest of the day was the usual boring laid on the sofa but I'm making the most of having Yorkshire Tea in the house.

Saturday 18th May

Dad and Mandy went to Leeds today. I'm not keen being on my own so I set myself up on the sofa so I didn't need to leave. I had my carer 3-4pm and I had a shower and changed my bedding.
I was hoping for a nice quiet weekend but I've been steady on my feet. I nipped upstairs and coming out of my bedroom I fell. My CareLink went off. I'd dislocated my hip in the fall and a few other joints which I managed to sort out myself, but not my hip. As there was no-one else to call CareLink sent for an ambulance. I was in a lot of pain so my myoclonic seizures started playing up (pain is a seizure trigger for me). With the help of some Entonox we managed to realign my hip. 
Once I was settled I shuffled down the stairs (I shuffle up and down them normally) and with help I got to the sofa. My POTS was playing up so one of the paramedics laid me on the sofa so my heart rate could come down and my blood pressure could stabilise.
The paramedics made me a coffee and a hot water bottle and then they called up the Clinical Assessment Team as I didn't want to go to A&E (there was little they could do for me and it would just make my ME and FND worse). The nurse was happy for me to stay at home. 
I had to use up all my tumbler of juice for my co-cocdamol (dispersible tablets) so I was just left with some diet coke. 
My friend Ai called me and we had a chat which was nice.
My hip was still really painful and it got to around 9am and I knew I couldn't make it to bed. I was in pain, I was thirsty, my continence pad was wet through and to top it off I had a migraine. I pressed my CareLink and they arranged for the adult social care to come out to me. 2 hrs later two carers arrived. They helped me get cleaned up, into my pj's, in bed and settled with a cuppa and ensured I had my meds nearby with a full tumbler of juice.
I felt so thankful for their care but I also felt angry and upset. I'd lost my dignity, my independence, my confidence. My health is so unpredictable and I could have predicted that evening/night. I also felt angry that I can't get a care package from any service to help me have my independence, my dignity, my resell and my confidence and also to feel safe and well.

Sunday 19th May

Woke up feeling better, thankful my migraine had eased though my hip is still painful today. I managed to get dressed and around lunchtime Dad and Mandy came home.
I've spent most of the afternoon redesigning my blog - if there are any aspects that aren't accessible let me know, or if the fancy and Ariel fonts aren't appearing on your web browser.
I've just done two days worth of college work (catching up from yesterday).
I'm now just about to finish and publish this post then settle down to bed.

Video description:
Monday: Subtitle screed for Victory (TV program) and a building briefly in the next shot
Tuesday: Time lapse video of me drinking out a cactus shaped cup and the drink disappearing fast
Wednesday: Watering my plant
Thursday: pinning a photograph onto my notice board
Friday: Squirting cash wash foam onto a small white flannel
Saturday: photo graph of the ambulance outside - my view from the sofa.
Sunday: Sroll down the screen on my laptop, on the screen is my newly designed blog

#meandmyME Week 3

Monday 13th May // Day 13: M.E. has taught me...

... to appreciate and be grateful for the smaller things in life, like someone bringing me a cup of tea/coffee, or letters from friends, or having a good night's sleep or a friend dropping me a text.

Tuesday 14th May // Day 14: Small wins

Getting dressed and getting out of bed!
Before I got ill this used to be just something I did everyday without second thought; now staying in pj's 24/7 would be amazing so finding the energy to get dressed is a small win that I now feel proud of myself for achieving.

Wednesday 15th May // Day 15: Past, Present Future 

Past... I was well (ish, I just had asthma and a spinal curvature so as a child I was familiar with hospitals and my mental health was a challenge and I spent time in hospital). When I got well enough I went to Uni to study nursing and I was leading an active lifestyle - I was a the gym nearly every day having a workout, swimming, yoga or dance classes and I cycled everywhere.
Present... I am mostly housebound or ('sofa bound' as I term it; some days are spent entire in bed) with constant and episodic symptoms. I also have other illnesses alongside the M.E. I try to focus on the positives as much as possible and see that my health is only a small portion of who I am but that's not always easy. I just try to take each day, each hour as it comes. I go through periods where I feel more resilient and then I go through times where I struggle to cope physically and emotionally.
Future... I hope to one day be well enough to return to University, work, and eventually train as a Child Psychotherapist and live my life 'differently normal' though I accept I will aways be disabled and if I can't return to University I'll come up with a Plan B.

Thursday 16th May // Day 16: Bed

My bed and my bedroom are my haven. It is my space to rest, recharge and relax in. 
My bed can also be my life at times in which I spend all of my day and night in.
I have a mattress elevator which is amazing and it makes just one simple thing (sitting up) a lot easier.
My favourite bedding is brushed cotton as it's soft and warm.
I also have some cuddly friends on my bed.
My favourite pillow is my giant square pillow which Mandy made me a Moomin cover for.

Friday 17th May // Day 17: Brain fog

Brain fog is really difficult. Everything is slow and you struggle to think and you can't process things. If someone throws a ball at you it's going to hit you; you can see where you're looking at them but you don't know that they threw the ball til after it hits you. It's also like being drunk , like really really drunk (without the alcohol) and you have slurred speech and you forget words and get things mixed up.

Saturday 18th May // Day 18: I am thankful for

My Dad who helps me, my carers, my friends/pen pals and the professionals who help or have helped me.
I am also thankful my my good days and the things I can do and the gadgets that gives me some independence and help me with day-to-day life even though it's still a struggle.
I am also thankful for my faith which gives me strength to hold out for the good days and know that God has an amazing plan for me.

Sunday 19th May // Day 19: Worst symptom

All of the symptoms are really difficult.
In terms of symptoms I'd say the worst symptom for me is the brain fog and pain. 
I'd also say that the fatigue really difficult to live with especially PEM fatigue as you can't predict how bad the PEM will be and what symptoms will come with it.
Also, it's not quite a symptom, more a result of the symptoms but I'd say the isolation. Especially when you're largely housebound you don't get out to see people as much and it's usually the same faces you see all the time. Letter writing helps with the isolation but it's not the same as having a real person to chat with, especially someone that's there as you're friend rather than say a carer or a parent.
"Half of disabled people say they are lonely, and one in four feel lonely every day." - Sense