Tuesday, 3 December 2019

International Day for Persons With Disabilities 2019

So as the title of this blog post suggests, today is International Day for Persons With Disabilities. This day first began in 1992 by the United Nations General Assembly.

This day aims to promote the rights and wellbeing of disabled people is all parts of society and to increase awareness of the challenges disabled people all over the world face in many different aspects including political, social, economic and culture.

When I was recently scrolling through the BBC's news app I saw a business article stating that the Office for National Statistics had found that last year the median pay for disabled employee was £10.63 an hour whilst non-disabled employed earnings were £12.11  (you can read the article here). How is this fair especially when you have you factor in the extra costs many disabled people face fr things like utility bills, equipment, care, therapies, insurance and more. The disability charity Scope has found that on average disabled people face extra costs of £583 a month and 1 in 5 disabled people extra costs of more than £1000 a month. Along with these finding Scope have found that on average a disabled person's extra costs are equivalent to around half of their income (exculding housing costs). Along with this findings for a disable person money doesn't go as far and on average £100 for a non-disabled person is equivalent to just £68 for someone with a disability. (Link to Scope's 'Extra Costs' Campagn)

How is all this fair?

As well as lower pay and extra costs for disabled there is also the lack of access whether this be physically such as getting into buildings or lack of suitable toilet facilities or social barriers like how many subtitled cinema screenings aren't at reasonable times. There's also the visibility of disabled people, such as using disabled actors for disabled parts in TV and film or in the modelling industry - far too often I see older people being used as models for equipment and aids and it puts me off a times as I think 'I'm too young to be needing this'.

Yes the world has come a long way in terms of the social model of disability (read my blog post on the medical and social model of disability here), but there is still a long way to go.

Monday, 2 December 2019

NICPM Update // 2nd December 2019

I knew rehab wouldn't be easy, but I didn't think it would be this hard; especially emotionally. I've had my fair share of wobbles and times where my body rebels and I just can't physically or emotionally take any more and I just have to try and trying is all I can do and what I have been doing even when I feel like I can't carry on.

When you're in the midst of something you became so focused on the moment that you forget to see the journey that you're on and without really realising I've slowly stated to make progress which should usually be a big 'woo-hoo' moment, but actually for me, it's scary. 

Just before I came here after 5/6 years of fighting I finally got a care package and I'm scared of losing that when I leave here, I've also been thinking a lot about the 'what next' plan, such as what services like an M.E service for example I'd like to be under as an outpatient to continue the support here. Staff try to steer me to just think of the day ahead of me but discharge still worries me a lot.

I'm also not an assertive person, but I'd like to be. There are times when I'd like to be more assertive about my care here when staff suggest I do something like my breakfast routine ad when I'm having a bad day I'd like to be more assertive in saying that today I don't feel able to do my breakfast plan, or at least parts of it.

I saw my Occupational Therapist (OT) this morning and he wants me to wake up at an earlier time, again me not being assertive I tried my hardest to say how much of a struggle that would be but later on today I was crying my eyes out to the staff member doing a 1:1 (individual time with staff) how much I'm struggling, how difficult mornings are, how I don't feel I can be assertive, how much my body is struggling and how difficult I'm finding things emotionally.

Today I've had a few seizures or 'non-epileptic episodes' which on top of showering I'm looking forward to getting into bed tonight, especially now I have my duvet back (it had to go in the washing machine at the weekend which then broke) as it's starting to get colder now.

Yesterday was eventful, but not the good kind. I stood up in the bathroom and my hip joint slipped out of place and I landed on the bathroom floor furthering ame to dislocate my shoulder (my joints go out more than I do - an insiders joke amongst those with hypermobility). Annoyingly here the emergency red cord are on a long plastic rod which doesn't reach the floor and it was during mealtime so all I could do, like when I've fallen before is just call out for help. After a while another patient heard me and asked out if I'd fallen over and she went and got a member of staff who called for an ambulance. With the help of some entonox (magic gas which if used sparingly and with great care I believe more patients with conditions like hypermobility disorders should, if felt necessary, should be able to have a supply of at home to reduce the need for ambulances and help patient self-manage their condition, but that's a conversation for another day), and with the help of the paramedics and some manipulation (this wouldn't be the case if you weren't hypermobile, able to reposition my hip; thankfully it had only partially dislocated. It's difficult as hypermobility dislocations are different in some ways to 'normal' dislocations so often they're not as well understood as was the case yesterday. But my experience with the paramedics yesterday was thankfully much better than the first experience I had when I first arrived here.

Anyway nothing is much new. My weeks are busy with OT, physio, psychology and sessions with staff as well as activities. I especially enjoy Boccia but tonight we did origami whch was good. Another patient taught us all how to make flowers. Last Friday was the final sensory group series session and we made aromatherapy sprays to make a start on making ourself a sensory kit. Some of the 'therapeutic activities' I've done with staff or am planning to do are going to Tesco, cooking (scrambled eggs on toast), and going for coffee. In my 1:1 times I also like going off the ward outside.

Not this weekend thats jus been but the weekend before my Dad and stepmum came and we went to Leeds Art Gallery and we went for coffee which was nice.

Today I received my bear made by Amie who runs Bear Has for M.E. Amie has Severe M.E and to occupy herself she knits bears for other people living with the condition. I feel so blessed to have come across such a wonderful lady who is so generous with her money time and especially her energy which I know having M.E too is so very precious.

Sunday, 24 November 2019

Nourish You Social Life // Self-Care Week 2019

Looking after our social wellbeing is just as an important part of self-care as looking after our physical and emotional well being.

Being connected to other people is vital, it helps us to feel valued and boosts our confidence and self-esteem.

Some of the things we can do as part of social selfceare is spend time with family and friends like having a games or film night or having a meal together, going to hobby groups to meet new people etc, attending places of worship etc, going out for coffee or a cinema trip or have a DIY paper session with your friend.

Social self-care is important, but also difficult to those who are chronically ill. I know this from my own experience. Being mostly housebound and only really leaving the hose for medical importance takes it toll on my social self-care, especially when you see the same few faces week-in, week-out, but finding other who understand your help needs can help and even when meeting friends in person can be difficult there are alternative ways of still being able to engage in self-care.

Even just sending someone a text or talking over FaceTime or Skype can be a way of socialising with others to was isolation. For me personally I love writing letters, it's a fun and creative way to connect with others and it gives me that social contact I'm not able to do much of in person.

Other things you could do is find a common interest group either online or if you want to try and get out more you could go to your local library of community centre might where they may have some good resources for you interns of finding a group, they may even hold some groups there. This can vary from craft groups, coffee mornings, physical activities like dance or yoga, cookery or gardening.

Saturday, 23 November 2019

NICPM Update // 23rd November

Not much of an interesting week. I've have various sessions with various people including Occupational Therapy, Physiotherapy and psychology as well as seen drs and spending time with the staff in my key team.

I've had my fair share of wobbles but I'm trying to talk and be honest and open. I also feel blessed to have some good friends and pen pals.

Saturday 9th November

Yesterday we did the printmaking workshop again. I made a card for another patient who's not well enough to come along. I had a chat with her in the week and she's lovely, all the other patients I've met are. It's also so wonderful being surrounded by staff and patients who understand. I don't know what illnesses the other patients have be we understand aspects like how tiring having a conversation can be, or struggling with the lighting and noise in a group.

Dad and my stepmum came Friday evening which was nice. I now have a plant for my bedroom and my own hospital friendly pet guinea pig. I've also got more nail polishes but I'm not sure where some of my other colours have gone? We played a few games of Rumikub which was nice.

Today I started my 'daily plan' it's basically a daily timetable. It was exhausting and frustrating when I was meant to be having my precious rest periods and the housekeepers disturbed me. By about 2pm I was struggling but I worked out with my nurse that I had quite a bit of rest scheduled after 3pm and ½ hour after tea (though this got disrupted) so I felt better knowing this. In my 2-3pm slot I had some individual time with staff so we decided to venture outside.

Friday 22nd November

Okay so I have't updated in a while. Lots been happening and I've been super exhausted.

I now have a 'Daily Plan' which is basically a rough daily schedule, but obviously things happen like a bad migraine and the plan doesn't quite happen. To help with my shocking memory I put my Daily Plan on my iCalendar so at the start of everything I supposed to be doing like 'rest', or 'snack', or 'bedtime routine' an alert pops up on my phone/iPad/laptop.

I'm working hard with my physio. In the conservatory they have a pedal machine. So I sit in my wheelchair and I'm clipped in and my feet and lower legs and strapped up and it's power assisted so it takes my feet around and you can add resistance and you can also push and pedal your own legs too. It's a rather fancy machine.

Today I just didn't feel motivated to do my physio but I thought, nope, I'm here to work hard, so I did it despite my lack of motivation.

I knew It would be hard word here but I didn't realise how difficult it would be physically but more so emotionally. I've been feeling quite homesick so it nice to see family at weekends. On Sunday my Dad and stepmum are going to take me to Leeds Art Gallery which I'm looking forward to.

This evening my allocated worker in my 1:1 time took me out. The hospital is on a hill so it's difficult in my manual wheelchair so this evening I went in the ward's electric wheelchair but instead of me controlling it it's controlled by the person that would normally push my wheelchair (if that makes sense?)

It's not overly exciting being here, well I'm not here for leisure. I have sessions with my occupational therapist quite often, physiotherapist and psychologist (one birthing she's helping me with is how my health affects me emotionally which I've always struggled with but not really had anyone who understands, but also how my emotions can affect my health as with a lot of different illnesses).

I'm still unsure how they're going to reduce my seizures?

Saturday 23rd November

The weekends I look forward to but unfortunately I don't weekends fully off. Weekends and the odd weekdays I relish as there's not meeting with OT or physio etc.

I had an accidental sleep in this morning. I got woken up to take my morning meds then nodded off again only to be woken again to have breakfast.

The past few days I haven't managed to get much of my scheduled rest in. Last night I think I struggled to get off to sleep as my body was overly tired. Thankfully I managed to get off eventually.

I'm sleeping a bit better now. Before I was waking up regularly in the night but I'm now having more nights where I'm sleeping trough. I've been trying different things like reducing my caffeine intake and not having caffeine after 4pm (as advised by my OT).

My gastro problems are really difficult at the moment and again I'm trying lots of things to reduce symptoms. I find it hard sometimes when I'm told "just keep trying to eat" which I'm doing and it really doesn't work.

Boccia is a game I really love that we play here and we played that today after my suggestion.

Currently I'm fighting another migraine and it's in the middle of my migraine scale. There's migraines where it's bearable and I can continue as normal and then on the other end is the migraines where I'm laid in the dark and silence with raging symptoms and I can barely function. This migraine I have dancing colours going on and my muscles are very terse, especially my neck and I'm quite hypersensitive to sensory stimuli and I'm feeling very dizzy and disorientated as if I was very drunk without the alcohol or illicit drugs.

So on that note and also with my phone reminding me that it's time to rest I shall post this and try to update you as much as I can but my care here is my top priority.

Self-Care When You're Chronically Ill or Have a Disability // Self-Care Week 2019


Self-care can be more difficult in some ways when you're chronic illness/disabled as 
A) we get so wrapped up in prioritising in dealing with our health and getting through the day and the demands our of our minds and bodies
B) some things like going for a walk or meeting up with friends may be more of a challenge for some people

Sometimes we're so busy trying to keep afloat with managing our health and all that come with it (phone calls, emails, attending appointments etc) that self-care doesn't become a priority and it can be hard to find a space to take time-out. However, self-care when you're chronically ill/disabled is even more important as it supports our all-round welding. But even if you can find 5 minutes each day to do something like for a mindfulness exercise, do some stretches or put on a face mask.

Self-care, even the small things count

Even though we may not be able to do some of the 'big' self-care things, we can sell engage in self-care in smaller and more manageable ways.

Even the small simple things count for example:

  • Drinking plenty and eating healthily
  • Ensuring you remember to take the right medication
  • Going and sitting out in your garden or local park -  you don't need to walk or wheel to enjoy nature
  • Take up new things, like find a mindfulness app that works for you
  • Do some simple easy yoga at home or get out your physio exercise sheets and put that into your day
  • Pick up a new manageable hobby
  • Invite a friend or two round for coffee or a pamper session
  • Have a movie night
  • Take time out from social media
Even if you can't make it out the house or your are bed bound there are plenty of simple low-energy self-care activities you can.

Self-care is very individual, what might be helpful to one person might not necessarily work for someone else. It's all a case of trial-end-error to find what works for you and try not to get frustrated if you keep trying things and they're not for you. You'll find something eventually. It's important to listen your your mind and body and what it needs and what your limits and and it's a forever learning and evolving process. 

Even I'm still trying to figure out what works for me and trying to get into a daily routine of self-care.

So, how do we practise self-care when you're chronic illness/disabled?

1. Recognising and monitoring your own boundaries

Setting and monitoring blundering and learning to say 'no' when needed is an important part of self-care when living with a chronic illness/disability. You can't prioritise if you don't self clear boundaries.

Make it clear to other people around you - friends, family, carers what you can do and when you need help with; for some people this may change day-to-day. Making this clear to others helps others to know your boundaries so they can give you some independence but support you were and when needed to take the pressure off, and also so you don't get pushed beyond your boundaries. 

2. Reviewing our self-image

Having a chronic illness/disability can often come with a lot of negative feelings which can make it difficult to make self-care a priority as we don't feel we deserve it or it's not a priority.

But it's important to try and challenge ourselves and review how we feel about ourselves and try and achieve inner peace and be happy with our inner selves as well as our external selves and be accepting of the things we cannot change and think of all the things we can do and celebrate those achievements which make up feel more positive about ourselves. It's important to celebrate those achievements, no matter how small they are because you you they are the big victories.

Reviewing how we view ourselves can help us to feel more happy with ourselves and our bodies/minds despite it's flaws. We also need to find ways to value ourselves instead of valuing the things we do.

3. Connecting with ourselves 

When we have a chronic illness/disability we become experts at looking after our physical bodies - attending appointments, taking our medication, doing our physio exercises etc. However, it can be harder to nurture our inner self. As mentioned before, this may be because we feel inadequate or have a poor self-image of ourselves or we may feel that we have little value or that you may never be "good enough". It may also be because we are so wrapped up in looking after our physical selves that looking after other aspects of our holistic self don't become a priority.

It can be good to take time-out to connect with ourselves and try not to feel guilty about this. If you're going through a rough patch, whether it be physically or emotionally it's important to recognise that, connect with ourselves and ask ourself what we need. This may be doing something like prioritising our diary, rescheduling to a later date non-urgent medical appointments, planning a free day/week off of nothing in your diary to rest and recharge and reconnect with ourselves.

To try and connect with yourself you need to try and not hide your feelings from yourself. Try and find way to take care of your mind like creating a positivity jar or journal/scrapbook, notice and name your feelings, accept thoughts and emotions, practice self-compassion and being kind to ourselves and enjoy activities that just involve yourself such as arts and crafts, meditation or mindfulness, yoga/pilates, doing a jigsaw puzzle or activity book like sticker-by-numbers, dot-to-dot or colouring books, or sitting in the garden or local park or green space. Here's a blog post I did yesterday on 30 Things to Put into a Self-Care Box and tomorrow I'm publishing 30 Self-Care Ideas.

4. Pacing, planning, prioritising and rest

Often, and I'm guilty of this, when we're having a good moment we often use that moment to get things done, but then we push ourselves too much until we're running on empty adrenaline leaving us feeling utterly crashed which can for some of us set us back hours, days or even weeks. And then we do the same and we get stuck in a 'boom and bust' cycle.
This cycle is both damaging to our physical, intellectual/cognitive, mental and emotional states. But, great news, this cycle can be avoided with the practise of self-care and pacing.
I did a whole blog post on Pacing, Activity Management and Rest which you might find helpful if you want to read more.

Friday, 22 November 2019

30 Self-Care Ideas // Self-Care Week 2019

  1. Go for a walk
  2. Spend time in nature like watching the bird in the garden
  3. Have a pampering bath/shower
  4. Give yourself a DIY facial
  5. Have a digital detox
  6. Practice mindfulness, meditation or prayer
  7. Enjoy a quite cup of tea/coffee
  8. Ask for help if needed
  9. Eat healthily
  10. Drink plenty of fluids
  11. Give yourself permission to have a nap
  12. Reassess your priorities
  13. Let go of perfectionism
  14. Put exercise/movement into your daily routine
  15. Treat yourself to a massage or a manicure
  16. Read a book or magazine
  17. Do some colouring
  18. Attend a social or worship group
  19. Create an enforce boundaries
  20. Go and see a film, either own your own or with a friend
  21. Treat yourself to a drink from a café
  22. Have a clear out of your wardrobe
  23. Get into a good sleep hygiene routine
  24. Give permission to treat yourself to something like a new handbag
  25. Listen to some music, a podcast or audiobook
  26. Go to a yoga class
  27. Take up a new creative hobby
  28. Keep a journal 
  29. Know it's okay to cancel plans
  30. Reflect on the day that just been

Thursday, 21 November 2019

30 things to put into a self-care box // Self-Care Week 2019

Self-care boxes are a great tool to keep to hand for when we need moments or prompts to keep calm and look after yourself. Anyone can benefit from having a self-care box. From things that bring us comfort, bring up special memories or help ground up and calm our mind in a moment of crisis.

  1. A mini comfort blanket
  2. Headphones
  3. Tangles or other fidgets
  4. Aromatherapy oil or aromatherapy oil roller to put on pressure points or aromatherapy oil spray
  5. A weighted lap blanket
  6. Tea, hot chocolate or coffee sachets
  7. Colouring book
  8. Felt-tip pens or pencil crayons
  9. Puzzle books, sticker-by-numbers or giant dot-to-dot books
  10. List pad to write down coping skills as a visual reminder or to write a 'now and next plan'
  11. An elastic band - this can help those who struggle with self-harm
  12. Lip balm and/or hand cream
  13. Fluffy socks
  14. A packet of tissues
  15. A list of numbers and people/organisations you can contact such as friends, local crisis team or organisation like the Samaritans, Mind or Papyrus UK
  16. A 'Where's Wally' book
  17. Special memories such as a card or letter or photographs
  18. Mindfulness activities
  19. A tea bag to smell and hold to help with grounding
  20. Miniature puzzles like a miniature lego figure you can concentrate on and build
  21. Kinetic or magic sand
  22. A small soft toy
  23. A notebook to write and draw how you are feeling
  24. A favourite DVD or CD
  25. Your iPod or MP3 player
  26. Nail polish
  27. A 'Calm Jar' or snow/glitter globe
  28. Sensory tactile items like a spiky ball, play-doh, a koosh ball, squidgy mesh ball or glitter slime
  29. A favourite book or comic
  30. A favourite snack or hard boiled sweets or a lolly

A photograph of one of my self-care boxes

Wednesday, 20 November 2019

7 Areas of Self-Care // Self-Care Awareness Week 2019

Physical Self-Care

This involves looking after our bodies including health, nutrition, sleep, rest etc.

Some examples include:
  • Going for a walk
  • Having a bath/shower
  • Getting enough sleep and resting during the day
  • Eating a nutritionally balanced diets
  • Drink plenty of fluids
  • Take a rest or nap during the day

Emotional Self-Care

This involves emotional literacy, emotions, increasing empathy, managing stress and anxiety, developing compassion.

Some examples may include:

  • Writing a gratitude journal or creating a gratitude jar
  • Be more kind to yourself
  • Do a stress management course
  • Making time for reflection 
  • Working on developing emotional literacy
  • Being aware of ones own boundaries and saying 'no'

Intellectual Self-Care

This involves learning new things, thinking and creativity.

Some examples may include:
  • Practising mindfulness
  • Journalling
  • Reading
  • Learning a new skill
  • Doing a digital detox
  • Do a colouring or puzzle book

Social Self-Care

This involves having a supportive network of family, friends and others such as colleagues at work who you trust and can turn to when needed.
Having  a supportive and caring network of people around you helps build up a sense of belonging and connection.

Some examples include:
  • Join a social group, such as a local craft group
  • Asking for help when needed
  • Meeting new people
  • Spending time with others
  • Speak with friends, either send them a text, call/video call them or even send them a letter
  • Go out with people such as cinema or coffee dates

Environmental Self-Care

This involves being organised, having a clutter-free space to work at either for work or hobbies, a tidy room for rest and sleep, your home environment, a tidy care. Also minimising waste and monitoring home mine time we spend with technology.

Some examples could include:

  • Having a declutter of your home or work environment
  • Having a wardrobe clear out
  • Recycling as much as possible
  • Monitoring technology time
  • Tidying up after yourself
  • Maintaining and clean and safe living environment

Spiritual Self-Care

This involves your beliefs and values that are important to you and that guide you in the way you live your life. This could include pursuing goals and practises that help you develop your spiritual awareness.

Some examples could include:

  • Meditation or mindfulness
  • Having a reflection journal
  • Volunteering
  • Spending time in nature
  • Preyer, either alone or with another person
  • Find a place of worship where you feel comfortable

Financial Self-Care

This involves being responsible over your finances such as daily living expenses, income, insurance, savings etc and having a good relationship with money.

Some examples could include:

  • Knowing where your income in going in
  • Knowing what and when your outgoings are due
  • Paying bills on time
  • Keeping insurances up-to-date
  • Opening a savings account and saving money more wisely 
  • Using an appt or finances book to get track of ingoing and out going expenses

Tuesday, 19 November 2019

What is Self-Care // Self-Care Week 2019

Self-care is looking after your mind and body to support your physical, social, emotional and intellectual wellbeing.

We could engage in self-care by eating healthily, exercise like going for a walk, attend an activity group, talk with a counsellor or take time out of the day of a spot of mindfulness.

The dictionary definition of self-care is:

Self-care is good for us as it empowers us to take control and look after ourselves and be more self-reliant and become resilient both interns of of physical health as well as our mental health. Self-care also helps catch problems early and prevents problems from getting worse. You don't need to be ill to engage in self-care, intact it's better to engage in self-care to prevent problems occurring int the first place, especially when it come to our mental health.


Monday, 18 November 2019

Self-Care Week 2019

This week marks Self-Care Week 2019. Self-care is a vital tool look look after not just jour emotional wellbeing but your physical, social wellbeing too. 

This week I'm going to post some self-care info to help you look after yourself.

I will be posting about self-care boxes, mindfulness activities, yoga and other ideas for looking after yourself to get you going on your journey to self-care.

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.