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

Saturday, 18 May 2019

Messages to someone newly diagnosed with a mental illness // Mental Health Awareness Week 2019

10 things you should know...

1. It's not your fault
2. Recovery is't linear 
3. Things will get easier over time
4. You will have and good bad days
5. Don't feel ashamed
6. You are not alone
7. It's okay to ask for help
8. It's okay to take medication
9. There is life with a mental illness
10. Hope exists

H - hold
O - on
P - pain
E - ends

There are things that are possible,
Things that are impossible
But otherwise, 
I think that within my restrictions, 
Nothing is impossible
- Impossible Shoes -

Friday, 17 May 2019

GUEST POST by Rachel for Mental Health Awareness Week 2019

I have to admit I was a mixture of honored and shocked when I was asked to write a blog post about Mental Health Week. I'm no longer ashamed to admit that I have anxiety, depression, or PTSD. But generally when people reach out to me online, it's only ever to ask about my physical illnesses. I remember a time when I was scared to death to "catch" depression or for anyone to imply I had anxiety. This was also, notably, during the time I was a normal functioning person. The thought of serious illness scared me. But being labeled as mentally ill, scared me more because of the stigma behind it. In retrospect it was a stupid way to think. After all, mental illness can be treated and managed just as well as a physical illness. But, just like chronic illness, you don't "get it" until you get it. 

If I'm honest, I've been struggling with anxiety and depression since 2015. That was the year when I became physically ill. It's a bit of a long story, but I will crop it to just the important parts. Because after all, the "serious illness" that I was so afraid of caused the even "scarier" mental illnesses I have now. I was in the middle of my 2nd year of college when my body just started malfunctioning. I was the healthiest mentally and physically I'd ever been. And then life just hit me with a mystery illness. Nobody could figure it out. Or I should say no one wanted to. Except for my lovely primary care doctor. She has fought for me every step of the way. Even in the newest journey with my mental health. But back to the story. My first ER visit during this time they unknowingly diagnosed me with anxiety. I went in nearly passing out and with a racing heart. But they decided anxiety was the answer because I was young and "active". They told me to take some medication and "chill out". I found out later when setting up a patient portal through the hospital, that "anxiety" was listed as one of my diagnosis'. I was livid. How dare they call me mentally ill? I was upset about it for a long time. And I guess rightfully so, because I didn't have anxiety at that time. But I went home that night sad and still sick. I had more ER trips after this that all were a waste of time. 
But I needed help. I WAS sick. Despite the hospital not believing I was sick, my PCP sent me to a Cardiologist. He tested me, but found nothing wrong. So I was passed on to an Endocrinologist because of past hormone issues. The tests I did for him showed I was sick, but he tried to turn a blind eye. I called him on it, and he gave in and treated me. I shouldn't have fought so hard for his help, because he was the main reason I have PTSD. After a small misunderstanding on the phone, he verbally and nearly physically assaulted me in the exam room. One minute he was fine, the next, he was growling and yelling and balling up his fists like a fighter. I was horrified by the experience and ran out of the room crying. It's easy to say that we parted ways after that. I tried to push past that, but the incident still haunted me. Especially considering that he said every doctor would know how terrible I was and no one would want me. It scarred me, even to this day. 

As I became more ill and added more doctors to my list, the worse things became. I was fearful (still am) of calling the nurses for help. I let myself be mistreated and walked on because I would rather stay silent than go through that whole scenario again. Despite all this, I put on a happy face like I was fine. But it all came to a head in 2017. The loss of a friendship brought every feeling I had kept inside tumbling out. I was deeply depressed, having dark serious thoughts, and crying every night until I couldn't breathe. I was so disgusted with myself. I felt so ugly and so alone. I had tried to hide the fact from myself that I was mentally ill. I didn't want to believe this could happen to me. But it did. My internet friends helped carry me through until I built up the strength to see my PCP again. She said it would be ok and I agreed to go on medication. I was never ashamed to take it, because I was already on tons of pills at that time. I was more ashamed of the diagnosis of mental illness. After some trial and error, I ended up on an anxiety medication that has truly saved my life. And now I'm seeing a therapist who has helped me start to heal. I've also replaced all my medical doctors with new supportive ones. And I can't tell you how much better I've become since that change. And if it matters, I WAS sick and now have tests to prove it. The diagnosis' are many, but it feels validating to know they're real.
Honestly my life has really changed a lot since owning up and accepting my mental illnesses for what they are. It wasn't easy to tell those I loved I needed help. But it turned out to be the best thing I could have done. And so I can only wish the same for anyone struggling or newly diagnosed. 
It's ok to not be ok. But please don't wallow in your feelings every day. Get help. Talk to a friend.
Having a mental illness doesn't make you weak. It just means you have a confused brain that is missing some chemicals.
Mental illness will only ruin your life if you let it.
Now referencing the beginning of the post. When I got the original message, I suddenly snapped back into my old denial of my illness. I was hesitant to respond because the thought of displaying my mental health for everyone to see was scary and intimidating (thanks anxiety). But then I thought about it for a second and I realized I'm not ashamed of my diagnosis' anymore. And you shouldn't have to be either. Mental struggles are normal for everyone. Some just choose not to speak about it. Talking about mental health issues should be normal and encouraged. Yet somehow our society still struggles with this issue. I hope one day we do break the stigma. Because it's ok to not be ok. There is help. And you all are loved more than you know.

Wednesday, 15 May 2019

GUEST POST by Eliza for Mental Health Awareness Week 2019

It's 2019 and mental health is still a severely under discussed topic and that breaks my heart.

In the UK it is estimated that a staggering 1 in 4 individuals will experience a mental health problem at some stage in their lives.

There are so many things I wish to do in order to both raise awareness and reduce the amount of stigmatisation that surrounds mental illness, but as it is such a colossal topic of discussion, where does one start?

Lets start with this: you are not alone and your illness does not define you.

Although it's a clichΓ©, things do get better and recover is 100% possible. I'm not going to lie to you at all by saying that it's easy because in all honesty it is going to be the toughest journey you've ever been on. But despite that, it is defiantly achievable.

You are not going to achieve the 'recovered' status alone - you are going to need all the support you can get.

Mental illness stole everything from me; every ounce of self-love, everything I lived for, gone in the blink of an eye. At my worst I wanted nothing more that for my suffering to end. I wasn't suicidal, I just wanted life as I knew it to end.

My story's moral is that I'm recovering. I stumble along the way, granted, relapses are inevitable, but I'm alive and thriving.

Anyway, let me tell you 3 things that I've learnt through my journey with mental illness.

1. It's okay not to be okay

The pain we endure on an daily basis is tough. There is nothing wrong with reaching out for help. It is not a sign of weakness - in fact, it radiates strength and self-understanding. Understanding oneself and knowing when to reach out for help is an instrumental step towards achieving recovery.

2. We are shaped by the mistakes we make and the struggles we face.

We all make mistakes in life. Some of which will be repairable and some of which aren't - but that's okay. No matter the severity of the mistakes made we learn from them and allow them to shape us into the person we are today. At the beginning of my journey I thought my illness and actions I took would ruin my life, but they haven't - they have shaped me.

3. Normal is not definable

Have you heard of the saying 'you can't fit a square peg in a round hole?' Well, you are the the square peg. I cannot, no matter how hard I try fit you in a round hole. Your normal is different to my normal -  we do not have the same definition of the word . You need to define you life by utilising the things that make you happy; the things that work for you.

Now I'll end this with one of my favourite quotes: 
it [depression] may be a dark cloud passing across the sky but - if that is the metaphor - you are the sky. You where there before it. And the cloud can't exist without the sky, but the sky can exist without the cloud. 
- Matt Haig, 'Reasons To Stay Alive'
Thank you for reading.
Eliza x 

Tuesday, 14 May 2019

One Second Every Day - May: Week 2

πŸ’™ Monday 6th May

This week is M.E. Awareness Week.
Had Bluebird 11am-1pm. No been the best today. Had a few seizures and falls and been feeling quite tired. Spent the day on the sofa watching TV and blogging and trying to rest as much as possible. I'm now ready to settle down to bed.

πŸ’™ Tuesday 7th May

Not much of an exciting day. Had an acupuncture appointment this afternoon and spent most of the day on the sofa as usual. I also spent some time in my room on doing a bit of my college work.

πŸ’™ Wednesday 8th May

Bad M.E. flare day. I really struggled to drag myself out of bed this morning and I've felt utterly exhausted and brain fogged all day and I just laid on the sofa. I had a ½ Bluebird call which was I was thankful for on a day like today. I'm now just about to snuggle into bed for an early night.

πŸ’™ Thursday 9th May

Had Bluebird then and appointment which was an utter waste of my time, energy, the effort to leave the house and taxi money. If only the lady had bothered to have read my notes she could have told me that I didn't need to see her!

πŸ’™ Friday 10th May

My video and story (with subtitles and a transcript) for Action for M.E. (link here) got published today (also see my blog's Instagram as it's reposted there too! 
Due to my health I had to give up my poultry campaign work. I did try volunteering at the hospice as a play worker for a while but my seizures put a stop to that so when Action for M.E. approached me it was so good to once again use my lived experience to help raise awareness and educate people. (There's another project I'm going to help with but it's still in the early stages).
When Dad and Mandy got home they found my laid on the floor on my front having a seizure. I must have fallen from the sofa. We have no idea how long I'd been like that for and unfortunately my CareLink didn't set off. Dad kept and eye on me for a while (Dad and Mandy had turned me on my back) and I slowly came round. I wasn't able to communicate for a while and was very post-ictal, I was feeling very sick but I couldn't say. Eventually I tried BSL sign 'vomit' but Dad and Mandy didn't understand, Mandy then asked me to finger spell and she knew the alphabet which I didn't know she knew and I spelled out 'sick' and then started the letter 'c-y-c' for Cyclizine and Dad found some and gave it to me. He tried to sit me up my my POTS went haywire so he laid me down and I spent a few hours on the floor exhausted. 
We had tea late and after we'd eaten I went up to bed.
Dad's just brought me a herbal tea and I'm going to have an early night.

πŸ’™ Saturday 11th May

High fatigue day. Managed to clean Flop out as he really needed it. In the evening Dad and I went to a quiz night at his church. It was nice to get out the house and I enjoyed myself despite the pain and how tired I felt.
I also started listening to the special edition of The M.E. Show featuring short stories of people's lives of 'The Real M.E.' and I found that my submission was used which was amazing but also quite upsetting to hear, both listening to myself but being able to relate to other people's stories. I did a blog post on it ⇨ here with a link to the podcast and I also copied the transcript below. 
Just like with my video for Action For M.E. (link ⇨ here) it was hard to sum M.E. up in a few minutes but I briefly talked about a typical day for me.
It's been nice this week to have two opportunities to use my lived experience to help raise awareness.

πŸ’™ Sunday 12th May

Had a terrible nights "sleep". I was exhausted but I just couldn't sleep so I listened to a whole audiobook. Something different to the usual Harry Potter and it was quite good and even though I couldn't sleep it helped to just lay with my headphones and an eye mask for darkness and just listen as opposed to watching something on my laptop like I normally do. What didn't help with my sleep was the pain. I didn't drop off until about 5am. I later found out that I'd forgotten my night meds (I was rather exhausted and distracted when I got home).
So I've woken up this morning feeling awful - a mixture of lack of sleep, PEM and not taking my meds.
I've just been downstairs for breakfast and now I'm back in bed.
I've spent most of the day on my bed listening to an audio book dozing. I did spend ½ and hour laid on the sunroom floor making the most of the warmth. Once again I've had another day in a lot of generalised pain in my joints and muscles. I have come downstairs this evening and laid on the sofa watching easy watching TV that doesn't require much concentration.
I'm hoping for a better nights sleep.