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.