Friday 27 December 2019

NICPM Update // 27th December

Today I've just got back to the ward after spending a couple of days at home for Christmas. I had my lunch and then had a nap. It's the evening no and I'm really looking forward to bedtime!

Christmas Eve I just tried to settle back in at home with my daily plan. In the evening my Uncle and his girlfriend came round and we played and game.
Christmas Day I got up and had breakfast then we opened gifts and then I got ready to go to mum and Fred's house. We did gift opening and then had dinner and dad picked me up so I could go home and rest. I had a nap for a little while. In the evening one of my other Uncle's drove down to see us.
Boxing Day I just rested and tried to get back into my routine. I spent my activity time making cards for letter writing to pen pals and utterly wore myself out. In the evening my stepmum's family came round. I only stayed to eat; I found the noise and business really started to flare up my symptoms so I retreated back upstairs to my room with my noise reduction ear plugs and noise cancelling headphones. I also made sure I had everything packed.

There where some challenges and there where points where I go upset as I just got so tired and worn out or overwhelmed but I tried to focus on the positives of my time at home like spending time with family, spending time with Flop and playing lots of games.

There's a quote my friend says: "Just keep swimming and if you can't swim, just float."

Having my daily plan that I have on the ward helped give me direction as to when to rest, wash, do and activity etc. Unfortunately I wasn't allowed a lay-in except my 15 minutes from to get myself awake ready to go and get breakfast. There was also physical challenges such as the stairs at home - I defiantly did my daily physio! I also struggled not having alarms or people reminding or ding my medication for me.

Back on the ward things are slowly progressing which is positive. When you're in the midst of something you get so wrapped up in the moment that you forget to look at how far you've come and that comes with mixed feelings. Happiness on the forward steps you've made but also fear as you're stepping into this unknown zone. (One big fear from me is losing the care package I literally just got before I came here which I fought 6 years for).

One positive is that we're going to ask my local CCG for extra funding to extend my stay here for 6-8 weeks to continue with my rehab.

I'm trying to just focus on on day; one hour at a time. Now I am writing a blog post; next I will get my 7pm snack, now I am having my snack; next I will rest and so on until I go to sleep.

Even though I am progressing it's all still very difficult physically and emotionally. I'm still experiencing constant and persistent symptoms all the time, even when resting, these can rate from just one storms to experiencing numerous symptoms all at once. This obviously makes sleep and rest difficult as I find it hard to settle down and recharge because I'm almost in a battle with myself, my body and my mind. I keep being told things will get easier soon but it's been 10/11 weeks and there's still no relief from my symptoms. I'm just thankful for my medication as I'm sure my symptoms will be a lot wore without them.

I'm now in my pj's (I own far too many thanks to my mum who's bought me a lot of pairs recently) including the ones I've got on now which I got for Christmas and I just want to settle down for the evening. I've asked if my night meds can be given as soon as possible so I can get off to sleep hopefully by 9.30pm.
My sleep time is 10pm and I wake up at 8.45pm so I do get a lot of hours in of "sleep" but (a) often my sleep is pretty broken, I can struggle to get of, often because I'm overtired and (b) I've found with the amount of activity I do in a day and the reduction in day time sleeping that I need more sleep at night.

I think that's all for now. I will keep you updated about funding. I'm looking forward to a quiet-ish weekend and then the following weekend I'm going to see a special gala production by the Northern Ballet Company's for their 50th Anniversary.

Saturday 14 December 2019

Coping at Christmas

Whilst Christmas is for most people a joyous time for many people it can be a daunting time for some, especially to those that have a chronic illness, disability metal illness or autism. I'm only writing this post from my own experience and I know that each person's experience and ways of coping my differ from mine, but this is was I have to say on the subject.

In ways I do enjoy Christmas; it's a time to see family as growing up with my family living in various parts of the UK Christmas it the one guaranteed time to see and spend time with my family. I also love playing games and again that's a predictable certainty that we will be doing that.

Christmas is just as equally hard in so many ways; some of which you may be able to relate to...

The first one is grief, growing up Christmas Day evening we would always go to my Nana and Grandad's house with the rest of my family; then we lost my Nana and a few years ago my Grandad, and even though time has passed it still feels odd not to have that tradition.

I find the change in my usual routine and the house looking different difficult to cope with. I also struggle with sensory stimulation - flashing Christmas lights on someone's house, so much more to be looked at (such as the Christmas decorations around the house), Christmas music being played everywhere. It's often all just too much for me to cope with and process.

Christmas is meant to be a happy time, but when you're struggling with a mental illness such as for me depression and C-PTSD it can hard to feel happy. When you're around people you have you put on a mask and at Christmas you have to wear this mask a lot lot more and it can wares me down.

Even though I have come a million miles from where I was as a teenager with my anorexia I find the focus on food at Christmas time and then the subsequent New Year dieting craze still a challenge.

Carrying on with the mental illness and wearing a mask there's no days off when you have a chronic illness/disability and with that too you have to put on a mask. I feel the need to have to hide how much pain or fatigue or whatever other symptoms you're experiencing around people and go to that event and this tradition and almost battle with your body to get through as much as you can bare and you're waiting out for when you can retreat to the quiet comfort of your bedroom.

Continuing from that when you have a chronic illness/disability there's also a lot of delegation as to where and when to spend your limited precious energy. There can also be a lot of cancelled plans or downturned invites and feeling of missing out and also not feeling like you average 20-something year old.

There are positives to this though. It's not all doom and gloom. Explaining to loved ones you health problems can help such as dishing you up a smaller portion for Christmas dinner so you don't have a dreaded gastro flare up. Delegation can be difficult but choosing what events you will go to and also how long for will mean that you can have a nice enjoyable time with reduced levels of payback.

Listening to your body is important. You may need to say for example need extra sleep at night and if you do somewhere and you're body is saying it's had enough be kind to your body and go home or to the quiet retreat of your bedroom.

It's all very individual to you but make the most of the good moments, even if it's just for a couple of hours and be around of yourself for managing that.

You might find it helpful to have a mini coping kit. Like this Christmas I know I will find my noise reduction ear plugs and noise cancelling headphones helpful to get some quiet in my bedroom if I'm sitting out of an even downstairs or if someone is paying music and I want a nap. I'm currently in neuro rehab but will be going home for Christmas so I'll have my daily routine to follow as close to as possible (though unfortunately no lay-ins will be allowed!)

Always look for the positives and rather than feeling like your health is preventing you, see your body as something that needs nurturing and kindness and remember that if you can't do something this year it's not a once in a life time opportunity as Christmas comes around every year.

Sunday 8 December 2019

NICPM: Little Victories

Today I managed something huge, I could say the negatives like how anxious I way and the symptoms flare and payback but I want to focus on the victory.

My allocated nurse this morning asked me what I wanted to do today in my 1:1 time so I said I'd like to get off the ward and go outside. Normally it would just be a wonder round such as the nearby little Mandela Garden. But then I thought about giving my venture outside a purse, a mission and to challenge myself. I I looked up to see if Leeds had a Flying Tiger store which sadly they didn't but they did have a Paperchase (I'd like to shop locally but that would be too much research to find somewhere and I know that Paperchase has things I like). If I'd probably looked up going shopping yesterday anxiety would have gotten the better of me, but doing it spontaneously didn't give me much time to be anxious and I felt excited to go as back at home the range of shops is severely depleted.

So after seeing where Paperchase was I asked my nurse if there was time and staffing for us to go and there was and she thought it would be really positive.

So I got ready and off we went. To make things easier I went in the ward's electric wheelchair (which is controlled by my nurse instead of usually whereby I'd have the controller).

I did get quite anxious but my nurse just said to try and focus of things that I could see so or example a nice rucksack someone had on, or a person's sparkly jumper or the nice pattern on someone's skirt. Once we got into Paperchase I was so focused on looking at things and trying to find what I was after that everything else sort of zoned out.

I got some mini rainbow notecards, a colourful writing set and some postcards and I treated myself to a nice pen.

On the way back my anxiety had started to come down. Being in a wheelchair can be difficult, people don't hear you when you ask if you could please get past or when they walk in front of you as they don't register that you're there and then glare at you for catching their ankles. In one part of the city's shopping there was a snow machine and a boy was so busy looking at it that he full on walked into me (and it did hurt a bit), I try to look at in humorously but I was miffed that neither the nor the adults with him apologised.

We got  back to the hospital but at weekends the wing where the ward is you can't get into at weekends. Both me and my nurse tried calling the ward but the phone was engaged. Thankfully the ward was on the ground floor and my nurse managed to get to attention of another staff member who let us in.

It was a huge challenge for me and a little 'well done me' moment. I'm now utterly exhausted but I'm trying to focus on the positives of today.

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 for 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. (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 2019

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. #sickbutinvisble
  8. #chronicpain
  9. #chronicfatigue
  10. #illness
  11. #disability
  12. #disabled
  13. #morethanadiagnosis
  14. #healthblogger
  15. #chronicillnessblogger
  16. #disabilityblogger
  17. #chronicillnesswarrior
  18. #mentalhealthblogger
  19. #spooniebloogger
  20. #selfcare
  21. #mentalhealth
  22. #zebrastrong
  23. #spoonie
  24. #spoonieproblems
  25. #chronicillnessproblems
  26. #emotionalwellbeing
  27. #chronicillnessblog
  28. #theworldseesnormal
  29. #awareness
  30. #disabilityawareness
  31. #invisibleillnessawareness
  32. #chronicillnessawareness
  33. #mentalhealthawareness
  34. #spoonielife
  35. #chroniclife
  36. #chronicsick
  37. #sicklife
  38. #mentalhealthmatters
  39. #emotionalhealth
  40. #emotionalwellbeing
  41. #itsokaynottobeokay
  42. #endthestigma
  43. #beingincurable
  44. #careaboutrare
  45. #raredisease
  46. #rarediseaseawareness
  47. #accessibility
  48. #mobility
  49. #mobilityaids
  50. #babewithamobilityaid
  51. #caregivers
  52. #holistichealth
  53. #chronicillnesswarrior
  54. #[insert illness]warrior e.g #MEwarrior
  55. #chronicillnesslife
  56. #painsomnia
  57. #fightingformyhealth
  58. #tubefed
  59. #spooniesupport
  60. #spoonielife
  61. #butyoudontlooksick
  62. #health
  63. #fighter
  64. #chronicdisease
  65. #awareness
  66. #hope
  67. #healing
  68. #chronicillnessfighter
  69. #chronicillnesssucks
  70. #pain
  71. #thebarriersweface
  72. #makeourinvisiblevisible
  73. #inVISIBLYdisABLED
  74. #brokenbutbeautiful
  75. #disabodypositive
  76. #bodypositive
  77. #spooniecommunity
  78. #disabledcommunity
  79. #disabledtogether
  80. #wheelchairlife
  81. #wheelchair
  82. #assistancedog
  83. #chronicallyfabulous 
  84. #hospitalglam
  85. #disabledandbeautiful
  86. #painwarrior
  87. #iamapainwarrior
  88. #painwarriorstrong
  89. #disabiledwarrior
  90. #keepfighting
  91. #myscarstellastory
  92. #spooniestrong
  93. #disabledandbeautiful
  94. #brainfog
  95. #appointment
  96. #drsappointment
  97. #hospital
  98. #hospitallife
  99. #wellness
  100. #millionsmissing
  101. #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.