Wednesday, 6 November 2019

100 Best hashtags for Social Media for Chronic Illness Bloggers


  1. #blogpost
  2. #chronicillness
  3. #chronicinsta
  4. #invisibledisability
  5. #invisibleillness
  6. #invisibledisabilitylookslike
  7. #babewithamobilityaid
  8. #chronicpain
  9. #chronicfatigue
  10. #illness
  11. #disability
  12. #disabled
  13. #disabledandcute
  14. #healthblogger
  15. #chronicillnessblogger
  16. #disabilityblogger
  17. #chronicillnesswarrior
  18. #mentalhealthblogger
  19. #spooniebloogger
  20. #selfcare
  21. #mentalhealth
  22. #zebrastrong
  23. #spoonie
  24. #spoonieproblems
  25. #emotionalwellbeing
  26. #cronicillnessblog
  27. #theworldseesnormal
  28. #awareness
  29. #disabilityawareness
  30. #invisibleillnessawareness
  31. #chronicillnessawareness
  32. #mentalhealthawareness
  33. #spoonielife
  34. #chroniclife
  35. #chronicsick
  36. #sicklife
  37. #mentalhealthmatters
  38. #emotionalhealth
  39. #emotionalwellbeing
  40. #itsokaynottobeokay
  41. #endthestigma
  42. #beingincurable
  43. #careaboutrare
  44. #raredisease
  45. #rarediseaseawareness
  46. #accessabilty
  47. #mobility
  48. #mobilityaids
  49. #caregivers
  50. #sickbutinvisble
  51. #holistichealth
  52. #chronicillnesswarrior
  53. #chronicillnesslife
  54. #painsomnia
  55. #fightingformyhealth
  56. #tubefed
  57. #showmeyourpump
  58. #spooniesupport
  59. #spoonielife
  60. #butyoudontlooksick
  61. #health
  62. #fighter
  63. #chronicdisease
  64. #awareness
  65. #hope
  66. #healing
  67. #chronicillnessfighter
  68. #chronicillnesssucks
  69. #pain
  70. #thebarriersweface
  71. #makeourinvisiblevisible
  72. #inVISIBLYdisABLED
  73. #brokenbutbeautiful
  74. #disabodyposi
  75. #bodypositive
  76. #spooniecommunity
  77. #disabilitycommunity
  78. #disabledtogether
  79. #wheelchairlife
  80. #wheelchair
  81. #assistancedog
  82. #support
  83. #hospitalglam
  84. #disabledandbeautiful
  85. #painwarrior
  86. #iamapainwarrior
  87. #painwarriorstrong
  88. #keepfighting
  89. #myscarstellastory
  90. #spooniestrong
  91. #disabledandbeautiful
  92. #brainfog
  93. #fatigue
  94. #appointment
  95. #drsappointment
  96. #hospital
  97. #hospitallife
  98. #wellness
  99. #millionsmissing
  100. #disabilityadvoocate

Sunday, 3 November 2019

NICPM // Update // 3rd November 2019

The start to my second week here (last week) was a bit off kilter. I was feeling anxious and overwhelmed at having such a busy week the week before and the thought of having busier and busier weeks ahead of me and the pressure to make progress felt all too much and emotionally I hit rock bottom.

I've not been sleeping and I'm still not. I keep waking up in the night last night (today is the 31st) I was awake 4-7am is in really bad pain and today has been a bad pain day.

I'm making to most of having the support of staff and communicating when I'm struggling whether it be physically, emotionally or socially.

Frustratingly at the moment the dietician is on leave so getting my nutritional shakes prescribed is on hold so meal can be torturous at times for my gastro problems and being told by the drs to 'just try with eating' doesn't help.

What I've done is really scale back on activities, so for example I'd spend all day just writing one letter and pace the activity out. Or if I go t a group I'd just go for 10 minutes or stay in my room to rest. I think on reflection during my first week I tried too hard as in my head I was hear to get better (well as much as possible; I know being here isn't a miracle cure) and I just totally over did it leading to my meltdown the following week.

The ward has been given funding for an artist to come in to do and 8 week printmaking workshop which is exciting. We did the first session last Friday and yesterday as oe of the weekly activities we painted some backgrounds.

Tomorrow one of the staff is bringing in her dog who is a PAT (Pets as Therapy) dog and I'm really looking forward to that.

At the moment I am spending a lot of time in/on my bed so as a result I'm having to have daily anticoagulant injections. There's a nice student nurse on the ward at the moment and she's done today's injecting - it was her first time on a patient but she did really well.

Friday was okay. We had the printmaking workshop again. I was getting tired but I wanted to finish what I was doing especially as I'd made up the specific colours I was using. I overstepped my limit again and ended up having an series of seizures.

Saturday my priority was getting a shower as Id been prioritising my energy elsewhere.

The payback from that has been extremely difficult. My immune system has flared up and I have a horrendous migraine.

I didn't sleep well at all. I woke up just after 4am; around 5am I was still awake and still in pain so I asked for some pain relief. I couldn't get ff at all so I just lay listening to audiobooks and I was felt freezing cold.

Today is Sunday (3rd November).

One of the things that's been getting to me which I was going to bring up at the forum but I mentioned to staff this moning is bank staff coming into my room and putting on the florescent lights without asking me first. Last night the bank staff cam in andmy room was dimmed for  a room for a reason but when he came in as soon as he reached for the I sat 'No!' but he still put the florescent light on (which is the worst thing ever for me) and I when the light am on I immendiadly wet 'Argh' to which he released he'd done the rong things, but what was worse was later in the evening/night he came in again and again he immediately put the lights on, again! You would have thought he's have picked up not to put the lights on the first time. It's to the first time with bank staff either. Sure they can't take in everything and they don't understand like hypersensitivity to light because of conditions like M.E. or Autism but it dons't take much to ask first and surly if the patient has a dimmed room it's dimmed for a reason. So staff today (Today is Sunday (3rd November).ave put a sign over the florescent light switches which say 'do nt use', so hopefully that all get the message across that one the dimmable light is to be used.

I didn't sleep well at all. I woke up just after 4am; around 5am I was still awake and still in pain so I asked for some pain relief. I couldn't get ff at all so I just lay listening to audiobooks and I was felt freezing cold.

When my alarm went off I still had the awful migraine and feeing flu-like. On top of that the bank staff didn't check the allergies board in the kitchen and put cows milk on my cereal, thankfully I soon realised but I had the symptoms of that to deal with also. Because of my migraine they had to get the cn-call dr to prescribe me a second dose of Sumatriptan as here I'm only allowed to have 2 in 24hrs as opposed the the three I can have at home. I would also love a Lemsip right now but they/re not prescribed

I've spent most of today in the dark listening to podcasts. I did change out of my pj's to go to the creative writing group which was good and a nice distraction but it's massively flared up my stymies.

When I'm like thins I get frustrated with my health. I want to be able to enjoy a short group and not payback delay with feeling so ill and glued to my bed because being able to lay down ives me some relief. 

I'm trying not to think too far ahead and just focus on each day one at a time. But I hope once I can cope a bit better I can sit in the lounge /conservatory for a short while or enjoy getting out my bed.

Even though I've st goals with my OT it's nice that here's no pressure to meet the target/expectation buy the end of the week and that my care plans are fluid. Like sometimes when I shower I can do more but if I've neglected my washing and it comes to the point where I have to push myself to shower and I need more support then that's okay.

What I like about the philosophy here is that we're not pigeon holed by with illnesses we have. Everyone's care is unique to then and I'm seen as 'The is Naomi; these are her symptoms, this is was concerns her the most; these are her needs and these are her goals' etc. I'm seen more as a person who is struggling with her health biophycosocialily (bio = the physical aspects of my health e.g. symptoms, psychologically = how being chronically ill/disabled affects me and how stress for example affects to bio and socially = how my disability affects me socially, such as joining in groups or feeling isolated) and they all interconnect. For example migraine = bio, migraine pain gets me upset = psychological and socially = being isolated in my room in a low sensory environment.

Friday, 1 November 2019

GUEST POST by Sandie on Emotions Following Diagnosis

Hello, my name is Sandie and having recently been diagnosed with two chronic conditions that blew my world apart, I wanted to share a few of the emotions I have felt since receiving the news. It’s been a bit rocky, not gonna lie!

Firstly, I was fiercely defiant “bring it on then, I’m ready for you!” Only, I wasn’t ready. I mean how can you be? 

Next came bewilderment “What do you mean you can’t fix it?!” It just didn’t make sense, I mean weren’t they specialists?

Followed by shock “Seriously, you think it’s ok to leave someone, and their family, to cope with this by themselves? With no plan? No strategy? No support?!” Erm, can we talk about how I’m going to get to the toilet...?!

Then came the grief, the actual, heartbreaking physical pain of all I felt I’d lost. My life as I knew it, as my family knew it, gone. Grief is the only real word to describe that feeling. 

After what felt like forever acceptance dared to show its face “OK, if this is how it is then how can I make the best of it?” And I resolved to try and adapt. 

Finally I reached a truce, a kind of happy-to-be-here kind of place. A realisation that I am lucky in many ways. That, although different, my life can still be, and IS, rich and full. 

I’d really like to say I stayed at the last place -happy, content and fulfilled with my lot. But no, again, how can I be? I’m human and my emotions fluctuate daily, hourly even. One minute content, the next raging against the perceived unfairness of it all.

I guess what I’d like to end by saying is that whatever journey your emotions take you on, there is no wrong or right. To embrace all of them, you have them for a reason. And there are others out there, feeling similar emotions, facing similar struggles and enjoying similar triumphs. But together there is strength. 

Sunday, 27 October 2019

GUEST POST by Jess // The Reality of Living with Chronic Illness

Chronic Illness Sucks.

There is no going for brisk walks or a run, all I can do is sit and at times that is a challenge. My physical state has become the sorry remains of a once thriving gym goer. Most of my muscle have atrophied. Simple things such as water bottle lids are a struggle. I am limited by digestion to small portions of healthy foods on a continuous basis. My skin has suffered with dryness and easy bruising. The hair on my head is of all sizes from thinning breakage due to poor health. I am chronically struggling to maintain functionality. 

To the healthy eye I may not look sick. My age appears a bit more than what it is, but I have no neon signs pointing to my internal disabilities. You cannot see my heart rising 30 or more beats within seconds of standing. You cannot see the vertigo set it or the ringing screams in what is left of my hearing. What is visible is the shaking. The uncontrollable shivers without a cold wind. I have seen mothers become defensive as they get near me in public during such flare up. 

What is sleep? I can remember being young and staying up for days on end with no effect. On the reverse, I could sleep all day on the  blissful cold side of a pillow. Lately I find myself going to my room shortly after I tuck my little ones in. I do not sleep though. I stretch and stare trying to calm the muscle spasms and pain. The few hours I might catch like to awake me with dislocated limbs and pinched nerves. 

Pain is a mindset I have grown accustom to. It is a constant in my life that fluctuates, but it is always there. There is no end to it, only blurring. I have mastered the exhale as not to scream when high levels catch me off guard. I can relocate my shoulder, knee, ribs, and several fingers and toes without hesitation. Yet I am constantly asked what is wrong, and why am still complaining about it, just for answering their question. 

The questions are endless. Everyone wants to know what is wrong. The list is so long I try to bunch the main issues into umbrella terms, but then they want a further explanation. It all ends the conversation the same. Wow that sucks and you should try [insert yoga or vegan response]. If I could be cured by someone without any medical training simply because they heard something on the internet or from their cousin Janet, I wouldn’t be wasting my time with the vast collection of doctors and specialists it took to get this far.

There are many who simply do not believe there could be this much wrong with someone who is smiling. It took me almost a decade to be taken seriously. Many emergency room visits, testing, poking, prodding, MRIs, CT scans, and professionals who couldn't care less. There was one medical professional who asked if it was anxiety, disregarding my formal diagnosis’ that listed my tachycardia issues. They put anxiety in my chart.

The hardest part about being chronic is the effect on my life. The last time I took my kids to a museum resulted in a nasty flare up halfway through an outdoor trail. I missed the dinosaur exhibit. I couldn’t go on a simple nature trail with my kids without becoming ill and almost passing out. I cannot run, jump, or play with my kids; something I would love to be able to do and I feel that it is not fair to them. 

You cannot see what is going on with my autonomic nervous system, my brain, my eyes, my ears, or my joints. I assure you; it is not ok. I will not complain about it openly. I will try and push myself to avoid showing how bad I feel. I have to choose my friends very, very, carefully. I do not need any more people telling me to get over it or roll their eyes when I don’t stay out late, or I have to sit down a lot.  Chronic illness is torture I disguise with a smile. 

Friday, 25 October 2019

POTS Awareness Day // Dysautonomia Awareness Month 2019


Today is the first PoTS Awareness Day. 
"Postural Tachycardia Syndrome (PoTS) can be a life altering and debilitating health condition. Simply standing can be a challenge for people affected by the condition as their body is unable to adjust to gravity. PoTS is due to an abnormal response by the autonomic (automatic) nervous system ad is characterised by orthostatic intolerance (the development of symptoms when upright that are most relieved by lying down). Symptoms include palpitations, lightheadedness, fatigue, sweating, nausea, fainting and headache, ad are associated with a persistent increase in heart rate from the lying to up right position." - PoTS UK
I got a diagnosis of PoTS this year. I struggle to stand for even short periods of times so I often need a wheelchair to help me manage my symptoms (alongside my other illnesses). When I stand my blood pressure drops and my heart rate increases to try and compensate. For me my PoTS goes alongside having M.E. and my hypermobility disorder which is very common.

The PoTS UK website has really helped me to understand the condition as well as helping me find ways of managing the condition.

Though there is no cure for PoTS it can be managed by lifestyle changes and for some people alongside this medication.

For anyone interested in wanting to know more about PoTS or has the condition themselves or if you are affected by the condition such being a carer for someone wit the condition or you are a care professional I'd defiantly recommend checking out the PoTS UK website. 

Monday, 21 October 2019

NICPM Update // Tuesday 22nd October

My first full week at NICPM was pretty full on to say it was a settling in week. There was lots differs people to see from noses and support workers (HCA/NA), my physio, Occupational Therapy Team, various doctors including Dr Trigwell the lead consultant (as he was so senior I wasn't t expecting to met him let alone every week), dieticians, house keepers etc. Plus a whole bunch of assessments, physical assessments and observation, questionnaires and lots of other bits of paperwork.

There were also groups which are all optional. At first I was anxious of gong to these as I struggle socially but the other patients I have met are all lovely. I went o the chair based yoga and relaxation group and the sensory group. I didn't go to the pamper group in person but the student nurse taking the group came to my room and did the activity with me (homemade face masks).

We don't discuss personal details in groups but in the sensory group we did a colour visualisation exercise and when we got the the colour green myself and another group member we both visualised ourselves out in a meadow and in the reflexion we both said it was nice to see ourselves outside as we we both housebound.

The other patients I met so far are all lovely and we'll say hello in the corridor. One patient came and plaited my hair for me on Sunday. Another patient at the weekend sent everyone a card saying she was going out shopping and asked if there was anything anyone needed and I'd left my face wash at home so she picked some up for me which was so kind of her.

It's been great to have the support of staff, not just practically but emotionally too when I'm feeling a bit wobbly or I'm worrying about something they're there to sit and happy to have a chat, even if it's during the night.

Over the weekend one of my key workers put a sleep care plan in place with me.

Each shift: Morning, Afternoon and Night you get allocated a key worker and you get 1:1 time with them if needed say to have a shower, do paperwork, have a chat, visit the mutifaith room etc if you wish, but all the staff are free to support you too.

I've gotten used to not feeling a bother pressing the call bell now.

Yesterday (Monday) I've felt a bit off kilter. With my key worker we identified that it was because last week was so busy an exhausting and I was anxious about having another exhausting week, so we decided to keep today low key I have no idea about tomorrow. I'm trying to utilise the support of the staff and make the most of my time here and talk to the staff when I'm struggling. I also feel there's a pressure to cram in as much work and make the most of my time here which feels like trying to achieve the impossible.

Last week I got referred to podiatry as my toe had been sore (Dad told me it was nothing but it turned out to be an ingrowing toe nail). So podiatry came today and she said because I'm mostly in bed I needed a better mattress so they ordered for me an air mattress which came pretty quickly so I'm on that now and hopefully it will take the pressure off my joints too. I had a short session with the OT today so today was fairly low-key.

Staff have been listening to what helps me with my autism such as my communication cards. Another thing I find helpful is the staff using the wipe board to put notes and information on like when my next physio and OT sessions are, who my key workers are for the day, and reminder such as to brush my teeth, the plan of the day ect. I have a range of coloured wipe board pens and staff are getting more and more creative with using different colours and drawing pictures.

Yesterday I just hit rock bottom physically but more emotionally but I had a chat with the staff. I think what's not helping is the fact I've not been sleeping well waking up in the early hours.

Today (Tuesday) I thankfully have nothing on. Not OT or physio etc and groups are optional so I'm just going t have a recharge day. My key worker this morning asked me if there was anything I wanted to do so I opted for a hair wash. I'm trying to break challenging tasks like washing down so today will be a hair wash, then on another day I can just focus my energy on washing my face or body. My OT is going to help me work out which my baseline is to prevent the 'Boom and Bust' cycle (he called it something else but that's what I've known it to be called. He's also going tot help me with activity management and eventually putting together a daily time table.

I've had some post recently. My pen pals have been sending letters here. Yesterday my Moomintroll light arrived and when I woke up in the night it was nice to put that on. Then today my © Stickman Communications order came. i got a couple of positivity posters and some more pacing post-it nots as well as a couple of cards, one for when I'm struggling with my speech and the other is a bather nom break so if I'm in a group for example I don't need to announce that I need a bathroom break.

Also this morning one of the other OT's came to give me a leaflet as on the unit there's going to be an 8 week printmaking workshop which is really exciting as I love printmaking and surface design. Plus it will be  positive challenge to be ready for the session at 11am. (I'm not a morning person at all) so that's all exciting and it's nice that I'll be here for that.

I'm getting used to my air mattress though the pump for this one is a bit noisy, but my headphones help and I'm sure I'll get used to it *hopefully*. M.E., me and noise are an unhelpful mix.

Thursday, 17 October 2019

GUEST POST by Lena for Invisible Disabilities Week 2019

This was originally going to be a very different blog than it is now. I’ve thought long and hard about what I most want people to know about living with invisible disabilities. First I was going to tell you about the struggle to get diagnosed, then I was going to do a list of things not to say to someone with an Invisible disability or illness. You’ll get to read those one day, but this is much more important in my opinion. 

I am here to talk to you about Invisible disabilities and depression. When you look at me you see a healthy 28 year old woman. You see a wife, a dog mom, an administrative assistant, and a blogger. Here’s a sneak peek at what you aren’t seeing.
  • My parents were told I would not make it to 5 years old.
  • Was told I would not make it to 18 years old.
  • I was told I would never get to go to college, get married or have kids. 


This knowledge broke me. Imagine walking through life with an expiration date. A person should not know even a rough estimate of when they are going to die. I did not take anything in life as seriously as I should because I was going to die anyway. The future wasn’t real to me, it was a fictional thing I was not meant to experience. I didn’t plan on adulthood, I didn’t expect to see it and did not prepare myself for it. When it was time to go to college I dropped out twice because I was gonna die anyway. 

Fortunately, I am alive. I am 28 and very healthy thanks to medical advancements in Cystic Fibrosis, and the diagnosis and treatment of my Lupus which was a mystery to us for 14 years. I’ll admit there were huge set backs and terrifying days, weeks, and months over the years. There were hospitalisations I was sure would be the beginning of the end for me, but by God’s Grace, a wonderful family, and doctors who didn’t give up on me, I’m here. I am alive. 

Being here isn’t the miracle it sounds like for me. I am broken now. I have ever lasting diagnoses that I will have to monitor for the rest of my life. Taking medicine every day for less than 20 years wasn’t daunting to me, but taking it every day for the last 28, and the next 50 or 60 is daunting. I don’t have the free time to accomplish the things everyone else does because of this, I spend hours everyday maintaining my ability to simply live. The idea that I may never go two or three months without seeing a doctor or getting blood work breaks my heart. I am blessed to be here, but it’s exhausting.

I look healthy though, so people expect me to have accomplished and succeeded at as much as they have in life at my age. They don’t see that I couldn’t walk around a grocery store on my own for 2 years. They don’t see when my husband had to brush my hair. They don’t see the days, weeks, and months I obsessed over the things I would do if I ever felt better. They don’t see the hours I cry each week because I feel I am wasting my newfound health.

I hate meeting new people because I have to tell them I’m just an Administrative Assistant. I hate getting to know someone because how do I explain the 4.5 years of my adult life where I fought my body every day? How do I tell them I don’t have kids yet not because I don’t want them but because up until recently we were certain I and the baby would die if I were to get pregnant? How do you cover any of these subjects in light conversation? So I am left under-sharing and seeming off-putting, or over-sharing and seeming needy. There is no winning socially when you have an invisible disability or illness hiding inside you. 

Now I’m 28 years old and I am so painfully aware that I want more. I want so much more. I want to be the wife my husband deserves. I want a career, not a job. I want hobbies. I want friends. I want to feel like I am a part of literally anything, because I never have been. I am awake now, and it’s a nightmare. Every minute of every day all I can think is how much of my life has been wasted fighting my invisible illnesses and how much more of it will be spent that exact same way. 

Living a life with Invisible Disabilities is a nightmare I would never wish on anyone. This depression eats you. This is the reality of life with an invisible disability. Now I am faced with an almost insurmountable challenge. Living boldly, and building the life I want to have despite my . It’s the scariest thing I’ve ever faced, way more terrifying than port-a-caths and hospital beds.

Tuesday, 15 October 2019

GUEST POST by The Kiwi Spoonie // Invisible Disabilities Week 2019

I'm the Kiwi Spoonie, some of you might know me as the blogger and Instagrammer who posts about Ehlers-Danlos Syndrome and chronic illness. On the internet, I'm visible (though still a small-timer!) as a chronic illness advocate, trying to make some noise for silent, invisible illness. 

In real life, however, I'm the girl on crutches that not many people understand. I have Ehlers-Danlos Syndrome, which has caused chronic soft tissue injury and nerve damage in my lower back, affecting my left hip and leg. So I can't walk properly. Nothing really happened to cause this. There were a few events leading up to my back being this way, but it boils down to just plain bad genetics. I was born this way. I can't say "I fell down a skii slope" or "I was in a car crash" when people ask "what happened". 

People see me, they see they crutches and they assume that being a young, reasonably healthy and fit-looking woman, I must have just injured myself and I'll be getting better. When I stumble through an answer that confirms no, I may never recover, I hate seeing their faces drop. I stumble through this answer, because most of what they are asking about, they can't see. It's Invisible. To me, the leg and hip are only a tiny part of my problems. 

Let be give you a few examples of what you can't see: 

CCI - Cervical Cranial Instability

Essentially, my neck is unstable. For me this means that I have nerves in my neck that are being compressed, muscles that are spasming all over the place, and blood flow to my brain being compromised. All because the bones move too much. It's not so severe that I have to wear a neck brace all the time though. And I haven't had surgery, so no scar. You can't see it. But boy, can I feel it. It causes me constant chronic pain to the level that I need opioids. It overbalances me. It further limits my choice of activity. And You can't see it. 

POTS - Postural Orthostatic Tachycardia Syndrome

A common complication of EDS. In brief terms it's a heart that pumps too fast on changes in posture as well as having a nervous system that doesn't react properly to changes like hot or cold whether. It affects every minute of every day of my life. It's had me bed-bound. It means constant chronic fatigue. And no, I don't mean just tired. I can't have a general anaesthetic unless I wan't 8 weeks stuck flat on my back afterwards. And you can't see that. 

MCAD - Mast Cell Activation Disorder

Another common complication of EDS. An allergy condition which can cause me to have a strong immune reaction to literally anything. Though I have been lucky enough to avoid anaphylaxis so far, I have to carry an EPI-pen just in case. For me it means being very limited in what I can eat, breathe, and use on my skin. It also means living in constant fear of the unknown. Imagine eating out and being nervous just because you don't know what brand of soy-sauce is on your chicken? And you can't see that. 

Those are just a few of the things you can't see. 

So when you see someone with a mobility aid and they say they have Ehlers-Danlos Syndrome - please do not assume the crutches or part-time wheelchair is their only hinderance. Every second of every day of our lives is taken up by so much that you can't see. We fight so hard, and we make it look easy. And you can't see that.

Monday, 14 October 2019

NICPM Update // 14th October 2019

So just to start off I won't be doing weekly updates as a) my health is so up and down and b) I'll be very busy with my care whilst I'm here and I want to focus on that most importantly.

So I arrived here on Thursday 10th October. The first few weeks here are me just settling in and the staff get to know me and my needs and how I normally function.

Friday wasn't the best day. I had a prolonged seizure in the shower (yep my brain picks some really great timings!) and they had the call for an ambulance and the paramedics treated me and the nurses appallingly, but one of the staff members is going to make a complaint and they said they'd support me to make one too.

The weekend was quite quiet. I managed to write a couple of letters. On Saturday I met with one of the hospital chaplains. One of the nurses also helped me unpack so I feel a bit more settled in. I wasn't well yesterday; I had a horrendous migraine and I'm still feel ill today (Monday) and I've found it hard to eat today.

One things that has been really nice is another patient sent me a card to say hello which was really sweet of her.

Today has been busy and quite overwhelming, especially as I wasn't told of what would be happening today which is something that helps me.

So today I've had a chat with the Dr - I've seen two of the Drs in my care team so far and they've been having little chats with me finding out about me, my needs, history, what symptoms are the most problematic for me at the moment etc.

I've also met with the dietician which was the main thing I wanted to happen this week as my meals have been a bit repetitive and limited, plus I needed to sort out my nutritional supplements,

Also today I've have a whole bunch of bloods taken as well as an ECG.

One of the things they do here is each day I'm allocated a key worker and I get given some 1:1 time with them to do what I want.

This evening I've just asked for a bit of quiet down time so I'm just sat updating my blog with my new zebra hotter bottle.

In my room I have a giant notice board like I have at home an I packed my jazzy push pins.

During the week each day they have a group activity. The student nurse today for the group activity was to have a bit of a pamper with homemade face masks which I've never done before. I wasn't up to joining people in the lounge so the student nurse came to my room and helped me put the face mask on and then wash it off.

Here they have a very holistic approach. I feel a nuisance calling the buzzer even for small things but the staff are fine with it and so far all the staff have been amazing and so supportive and it's nice to have the care an support and to not be struggling with even basic tasks.

I'll try and keep you updated as much as possible but as I said at the beginning my main focus is on my treatment here.

Bye for now.
Naomi

Sunday, 13 October 2019

Having an Invisible Disability

My health problems are real, even though other people can't see it and what others do see, like my wheelchair or crutches or orthotics is on a tiny fraction of what I'm dealing with. Things like pain and fatigue and all my other symptoms, like a dislocated joint (unless I'm waving around a x-ray), migraines, hypersensitivity, depression/anxiety and autistic traits can't be seen, only invisibly felt or experienced.

"You don't look sick" I've lost count how many times I've heard that over the years. It's not a compliment when someones says those words to you. Those words I find so funstrating to hear as I wish I could hand over a box of all my invisible suffering and it makes it hard for your suffering and trying to have your ill health taken seriously.

"Looking well" takes a heck of a lot of effort and it can be a burden to seem "okay" to the outside well and it's almost something you have to do because you have to live out your life through your suffering. If you spent your days acting out your internal sickness you would never get anywhere.

Often care professionals don't take your symptoms, like pain, seriously because you've become so accustomed to masking and living with them. Even when I've been rushed into A&E with something like a badly dislocated hip internally I'm shouting/screaming/crying, but I've learnt that that get's me nowhere, so I quietly and subtly deal with the pain and she I'm asked how I'd score my pain I'm not believed because I'm not shouting or screaming or crying.

People around you question you, why are you not "trying hard enough" or "pushing yourself" to get a job (or some other part of adulating) because you "look" capable of working. When in fact they only see me, which is briefly, is when I'm having a "well" moment because I've rested and recharged and tried my hared to summon my "functioning human" mode to meet that person. And then when they leave I can go back to my usual position of being curled up in a ball on the sofa too tied to lift my head ill mode externalising what my body s screaming about internally.

And even though I'm a pacifist when people tell me "you don't look sick" or "you need to try harder" what you really what to do is punch them.

It's okay to not feel okay. And if you want to get upset or angry then go for it!

There is no stereotypically "ill person" - 19% so almost 1 on 5 working aged people in the UK are disabled (Scope) and the vast majority of those people's disability will be largely invisible. Each person's disability is unique to them; even two people with the same illness will not have the same difficulties as one another.

Links and References

Sunday, 6 October 2019

Big News!!!

So n Friday I got the news I've been waiting a long time for. I have bed at the neuro-rehab unit in Leeds and I will be admitted on Thursday!

Back when I first net my neurologist in 2017 he wanted me to go there and since then my health has declined. The process of applying or funding was delayed as no one locally knew who was responsible to ask the CCG for funding. Finally when I got my independent advocate she made it clear ro my GP that it was his responsibility and she ensured he did send of the request to the CCG. Initially the request was denied as they wanted more information so with more information and a reappear the funded was granted, but the CCG would only give 6 months then after that time we'd have to reapply. I spoke with my neurologist and MP to try and contact the CCG to extend that 6 months but the unit in Leeds was also aware of the time limit we had too. The funding was going to run out on the 2nd November so I got the bed just in time.

Since Friday I've been feeling quite anxious and I've made a start on packing and there are a lot of emails and phone calls I've made and I've got on my to do list for tomorrow.

It won't be a magic fix for me but it will give me much needed support and hopefully get some management and even some improvement of some of my symptoms. I'm also looking forward to being around staff who understand my illnesses and being with other patients who have similar health struggles.

I will try and keep you updated as much as possible whilst I'm there but obviously I'll be busy with treatment and then resting and recharging in-between.

Thursday, 3 October 2019

One Second Every Day - September: Week 4 // 2019



Monday 23rd September

Today's been unfortunately eventful. I had my carer come and I had a seizure in the shower. I then had another seizure on the bathroom floor an another in bedroom; each getting longer in length. By my third seizure it was fairly long so my carer called for an ambulance.
The paramedics came and weren't happy with how fast my heart rate was and wanted me to go to A&E but I knew there would be little A&E can do so I stayed at home.
My carer got me my meds and some lunch and helped me with a few other bits. My care agency wanted her to stay until Dad got home but that would have been hours and all I wanted to do was sleep and there was no point my carer hanging around.
I had a sleep for a while until Dad came home and he made tea (evening meal) and we watched some TV.
I called TASL patient transport to get a pick up time for my appointment in London tomorrow but there was no record of my journey! That got me in a bit of a panic as I felt unsettled with he change of plan but also having to cancel and rearranged my appointment.


Tuesday 24th September

I was supposed to be in London today but there was a mix-up with patient transport so I feel a bit unsettled with the change to routine. I called the Pain Clinic/hospital this morning and thankfully they had an appointment for next Monday - I was expecting to waiting until February/March time!
My mum called to say she was passing by and asked if I was free for a coffee so she and her carer popped round for a short while.
I had a sleep for a while as I've been quite tired today.
My pain levels are still a bit of a struggle.


Wednesday 25th September

Today's been a slow kind of day. I spent a while in my pj's as I had no one to tell me to get dressed and I enjoyed the quietness and freedom of having the house to myself. I had a sleep and then it was tea time. After tea I watched some TV and  then I settled myself in bed with my laptop which is where I am now and I'm feeling quite tired so I'm ready to get off to sleep.

Thursday 26th September

Had my care visit today, thankfully it was drama free today.
One really big positive of today is I got a phone call from the neuro-rehab unit in Leeds to do the first half of my pre-assessment. The nurse started off explained a bit about the unit and the programme and then asking me what my needs are. I was getting quite tired talking especially after having a shower today so she's going to call me back Sunday to do the second part.


Friday 27th September

(Forgot to fill in today)

Saturday 28th September

This afternoon I went out with mum. First stop was coffee. We then went and had a good look around The Range. Totally broke my stationary and craft buying ban but I should have enough to keep me going for a good while. 
We got back to mum and Fred's house (Fred is mum's husband) and I had a rest on the sofa. After eating we sat and watched Silent Witness and it was a nice but super exhausting day.

Sunday 29th September

This was my recharge day ready to head to London take 2 tomorrow.
Felling quite run-down today. For me with my PEM (Post Exertion Malaise - a symptom of M.E.) my immune system flares up. I have come across another name for PEM which is PENE which is Post Exertion Neuroimmune Exhaution which factors in the low immunity response or cold/flu-like symptoms when exhausted following activity.
Unfortunately today the nurse from the rehab ward in Leeds didn't call me back.

Monday 30th September

Managed to wake up on time. Patient transport came on time and we had avoided any major problems there and back.
My appointment/assessment with the Pain Clinic went really well. I felt really involved and included in the conversation and listened to in what I felt I needed and what where my main problems and concerns. We have a plan but it all depends on the outcome of their MDT meeting (Multi-Disciplinary Team, basically lots of different professionals from different backgrounds such as Drs, physiotherapist, occupational therapists, psychologists etc).

Video Description

  • Monday: Photograph of an ECG reading, The paper is a long thin strip which is white and red graph paper and black heart tracings.
  • Tuesday: Looking out the window with it raining outside. Out the window can be seen a lawn with a patch going through, a driveway and garages.
  • Wednesday: Folding a mini envelop. The paper is patterned teal and white.
  • Thursday: Putting a sticker onto a decorated red envelope. The envelop is decorated with white torn paper in the bottom left corner on top is torn patterned paper and another vintage stamp style sticker already stuck on.
  • Friday: Using a wooden stamp to print 'hello' in blue on an envelope
  • Saturday: A small sinclair c5 type vehicle driving in front of us on the road
  • Sunday: Opening the latch to a plastic box
  • Monday: Pressing the 'Level 0' button in the lift