A little lost in the maze

I have to admit that I have been feeling a little lost, I am having to face the fact that my current role of working with children seems further away, and realistically may not be something I can get back to. I cannot help but feel that it may be back to the drawing board for me and that’s tough.

Sometimes I feel like it’s okay, I will manifest this wonderful new idea and bring it to fruition with my usual energy and passion! Then there are times when I feel tired and beaten and I wonder what I’m going to do with this new me. I also feel that it’s almost impossible to go back to my role, as it reminds me too much of who I was, or rather what I could do and that’s upsetting. I hope that makes sense.

Applying for benefits

Yesterday for the very first time in my life I applied for ESA (Employment and Support Allowance) a benefit to help those who cannot go back to work due to illness, and who have had the full amount of SSP (Statutory Sick Pay). I have trouble getting my head around this as it has been eight months since my hospital admissions and I had hoped that everything (me) was going to be in ship shape by now. The forms took some time, but I finally got them done, so I can tick off a tick box, and I ate a of a bar of chocolate for my effort!

Positive thinking

The pain I experience daily gnaws away at me, but because of the type of person I am, I know that I need to focus on the positive and my inquiring mind is already in search of something I can do from home. I need to feel useful in some way. I hope that there is something wonderful in store. I have been reminded by a special someone that I need to have faith that there is. Also, my new hobby is beginning to come to life, so there is already something for me to focus on. I will write a post on this soon.

Overcoming Barriers (yay me!)

I have been reflective over this last week or so. I have overcome barriers like; finally coming to terms with the fact that I need more help physically. I made those first steps by renting a wheelchair and found that I do not have the strength in my arms to get myself around and its so much harder than I thought.

I naively thought that I could just jump in a wheelchair and be on my merry way. However, it wasn’t as easy as I thought and I got stuck on a road unable to get up the curb (which was flat) as cars passed by I imagined the people inside going – ‘deary me’ as they passed by me. I eventually made it out of the chair, but not before almost falling forward onto the pavement.

As I look back on this incident I remember thinking (after having got out of the wheelchair to get myself safely off the road) of a joke my husband made when he took me out in the wheelchair one day as I got out to sit down for a coffee: “it’s a miracle, she can walk!” I made myself laugh and it got me back home safely without further trauma. I find that laughter is my medicine and I promised myself that in this blog I would continue to find the humour in it all as it helps me to stay positive.

A Charity Shop Gem!

This week Matt and I went out, and although I still get that awful anxiety about going out in my home town, I actually didn’t feel as bad this time round. I had come to the conclusion that a self propelled wheelchair was definitely a challenge, but I am determined to keep going when suddenly a small miracle happened!

A charity shop was selling a motorised wheelchair and because I had already made that step to allow myself to have help in the form of a mobility aid, this actually didn’t feel too bad, and it didn’t take too much convincing! Matt makes it so much easier for me to make these type of decisions. So, we bought it and it is was delivered yesterday afternoon. My reasoning was, its an investment and when things are better i.e I get better, we can always sell it.

I feel okay about it and I will let you know how it goes, how have mobility aids helped you find freedom in life? How do you feel about them now in comparison to when you first thought about getting one?

Also, has an illness ever prevented you from working? Did you find something else that suited you better? i.e working from home, or something else you find fulfilling.

I hope everyone is okay sending lots of love

C x

Finding joy in every day

After watching a live stream on Instagram by itsaliceella, (someone who regularly makes me laugh and smile) I learnt that I could rent a wheelchair for a week from the Red Cross.

I have found it difficult coming to terms with even the thought of needing a wheelchair. I feel worried that if I don’t keep pushing myself to be active that I will lose the ability altogether, (you know, if you don’t use it, you lose it mentality).

After watching the Instagram live and reading other posts/blogs, I realised that it could actually give me freedom. So, last Friday I made that first initial step to rent one for the week to see how I would get on. The lady at Red Cross was so helpful and the whole process was pretty straightforward. Monday came and at 1.30pm the wheelchair arrived! I looked at it like my nemesis, I kept walking past it in the hallway thinking, is this freedom? One day later, I said to my husband can we go out after dinner so I can see how I get on?

Is this for me??

After dinner, we ventured out into the night with Evie and her disco flashing dog collar, and me in the wheelchair. I made it to the bottom of the road and a little further before I realised that it isn’t going to work for me and my short, little arms. My arms ached and hurt, my legs were stiff and sore and sitting even for a short spell was going to be problematic. Also, it was bloody freezing and that was also a contributing factor… Back to the drawing board I guess. Its not as easy as I thought. Maybe, it’s not the right size, it’s definitely not comfortable.

Every day I find the positives and I am as upbeat as I can be, but jeeze! I feel like I’m being tested at the moment and I have been mindful of my well-being as I know only too well that venturing too near the rabbit hole can be disastrous. However, what is so amazing is that I am starting to find like-minded people in places I never thought I would, and it has been comforting to know that I’m not alone. Far from it! there are a community of people that have been there, done it and got the t-shirt, so I can ask questions on a live feed because you are encouraged to do so by the creator (something I have never done before). Every response I have had has been kind and helpful.

On a greyer day, I find myself laughing with people that although find life challenging due to their disabilities, still manage to find humor on what can at times be a challenging way of life. In my opinion they are colourful, dazzling bright stars that really brighten my day. So to them I say thank you! thank you for your honesty, your time and understanding, you all make a huge, positive difference to my day!

I hope everyone is doing okay, I am sending you all a giant hugaroo

Much love

C x

Halloween 🎃 👻

Happy Halloween!

Halloween has always been a big deal in our house. There are 4 good reasons for this:

1. My birthday is during the half term break and it falls around Halloween time, so its always been a great excuse to dress up and celebrate.

2. I love spooky decorations and having worked in a school it was my job to make the role play area look utterly fantastic!

3. It was an excuse for me to tell the best spooky stories to children dressed up as a witch (picture below).

4, Did I not say – Dressing up as witch (so much fun!).

I hope you all had a great Halloween!

Much love

C x

This track was blasting out of our porch on our daughters blue tooth speaker! She tied it to the gas pipes with string just in case a cheeky ghoul or witch tried to steal it!

Mental Health

The last two weeks have been tricky for me. Since catapulting this blog into the world, I have felt a sense of relief to a degree, but I mistakenly thought that it would make it easier for me when out and about with bubbles (my pet name for my walking stick) or, if my husband (Matt) was pushing me in the chair. I thought; hopefully all the people I know would have read my blog therefore, I will not need to explain myself while out. As I write this I realise how ridiculous it was for me to think that. I still find it anxiety provoking to go out. Matt pushed me into town at the weekend and I felt a rush of emotions – panicked by the thought of seeing someone I know, feeling an underlying sadness that I am still struggling with mobility eight months after being in hospital, frustrated by the delay in appointments, or the lack of help to support me with what I can and need to do to get better, and finally the feeling of failure – Have I not tried hard enough? what should I be doing? I should be doing better! its my fault… Then the dreaded uncertainty i.e when will this end? will it get better? Am I going to be like this forever? etc…

Fight your way out of negativity

My negative thoughts can become all consuming and I am constantly trying to fight my way through it to get to the surface, where I can breathe and repeat positive affirmations to help me calm the storm that rages all around me. I do manage to get through it and not always on my own, Matt helps me by putting it all in perspective and I feel calmer.

Throughout this blog I have written about how I have always been like a busy bee, frazzled by my whizzy life and relentlessly coming back for more, so I guess that I shouldn’t find it surprising that I am finding my current situation challenging. I thought like so many other times in my life that this was just a blip, I could hide away for a little while and be back without anyone realising I was gone. Over the weekend and for the first time I actually thought well, if this is me then at the very least lets get something that will friggin move faster than these legs! So unless someone is going to get me a new pair legs then I need to look at other options. Its not me giving up, its me accepting that this is how it is for now, so lets make the best of it!

What am I doing to keep my spirits up?

In one of my previous posts I talked about Yoga with Adriene. I have for some time now been been practicing in my front room with Adriene on you tube. I have actually been practicing Yoga since before my daughter was born over eighteen years ago. I’m surprisingly not very flexible, but I don’t care, it helps me and that’s what matters. What also helps me is to try and eat healthily and find foods that are known for their healing properties. I have recently been reading about Anthony William, the Medical Medium and have just ordered his book – Cleanse to Heal, I will write a review in the ‘Book Corner’ he is also on Instagram so you can follow him on there. The other thing that is helping me no end is writing this blog and on Instagram. I find writing therapeutic and I am trying to build myself a little community of people that are going through a similar experience to me, some are a little further on in their journey, I find their posts insightful! AND as I have mentioned before Fearne Cotton and Happy Place is seriously keeping me afloat. Today I listened to the podcast with Fearne and James Arthur, which was great! What I am finding so helpful is that during these wonderful encounters there is so much that I can relate to and also learn about. Todays marvel mentioned on the podcast was a lady called: Brene Brown, who is an American professor, lecturer, author and podcast host. I am currently perusing her profile as I type.

I hope you are all well. Its a rainy Monday here, but I don’t mind its a great excuse to eat chocolate and drink coffee.

As always, I am interested to hear your stories, to find out how you keep your spirits up and look after your mental health and well-being.

So much love

C x

From now on..

From now on, I promise to be brave and try not worry about what people will think of me. I promise to do my best and write on my blog regularly, even if I am having a challenging day. If you are reading this then I actually had the courage to launch this site as everything before this was seen by just me. It is months and months worth of me typing away and feeling too scared to let everyone see it. The reason I wrote this blog remains the same, I would like for it to be a beacon of love, hope and positivity for others who like me have a chronic illness, or anyone else who happens to find it a long the way. So, if you are reading this post now then I did it! ‘Dear Body’ is live, Yay me!

Help along the way

I think that after becoming more active on platforms such as Twitter and Instagram, and witnessing some really unkind behavior, I felt dubious about disclosing such sensitive information about myself. However, yesterday I started reading Fearne Cottons book ‘Happy’ and as I turned those first few pages, I started to smile and I nodded my head in recognition… Fearne had chosen to write her story even though it meant reliving a certain part of her life, a particular time when she felt vulnerable. However, she still powered on through. From what I have read so far, I feel that like me she felt her story was meaningful and therefore wanted to share it in the hope that it would have a positive impact on others. From the comments I have read so far, it most certainly has. I don’t know her personally, but I do know that reading those first few pages gave me the courage to share my own journey and I am so grateful to her for that. Also, her podcast ‘Happy Place’ is amazing! and has also really helped me. I’m looking forward to reading the rest of her beautiful book over the coming days. With the official launch of my blog finally here, I felt it was time I share my poem.

Dear Body

Dear body, where have you gone?

I need to get going, power up, come on!

Dear body?!

We can do this together,

I thought it would be you and I forever.

Dear body?!?!

I’m now getting cross,

I need to go get, your not the boss!

Dear body

I’m tired and weak, my legs are not working

I need another sleep

Dear body,

I understand,

I’ve been far too bossy

I’ll take your loving hand

Dear body,

Okay we can rest

I’ll be still, slow it down

I don’t need to be the best

Dear body

Wow, I never knew!

how nice it is to see the birds

in a sky so blue

Dear body

let’s never be apart

I promise from now on

I’ll pay attention to our heart

My interpretation

This poem was a process, written over time. At the beginning of my illness I felt extremely frustrated, trying to deal with a body and mind that felt so separate was a real challenge for me. I touched upon this on the ‘about me’ page. I unintentionally wrote a poem that followed my journey. Its like stages the first for me was denial, then came anger, understanding, and finally acceptance and even though I have followed each of the stages, I still find that I jump between them sometimes, but find that I am mostly at acceptance (I think).

A creative mind

From a young age I put my feelings down on a page, it could be a poem, or just a diary entry. When I was singing in a band many years ago I wrote lyrics and like many artists my life experiences turned into stories that would work there way into a song, the tune would play out in my head and my band mates would then do their magic! When I had children, I wrote stories for them and my first book – Twizzle Brown and Lenny Sparkle was published in 2010. I then wrote others that were inspired by other children that I worked with over the years, and some of them illustrated a couple of stories that I went on to read to groups of children in schools, and at a literary festival. I remember inviting all the children and their parents, it was such a joy to see the children’s faces when I turned a page and they could see how wonderful the pages of the book looked with their beautiful drawings displayed inside. It was incredibly heartwarming.

I discovered that today is world mental health day. Having fallen down a fair few rabbit holes myself, I know that feeling. I couldn’t have made it back to the surface without the love and support of family and friends. If your reading this and your struggling, please know that there is so much more support that can be accessed. But in the meantime, a friendly face and a chat over coffee and cake may help (cake is totally medicinal for me). I am always having to check in on myself and am regularly searching for activities, books and podcasts to help. There are a few useful resources that I have shared throughout my blog, whether it be tea, music, books, or podcasts. I hope there is something for you.

Stay safe, keep well.

I hope you enjoy my blog, sending so much love

C x

Let it go!

Those three little words are like chalk on a blackboard for me (although, not so much when Elsa sings them! I just love the beautiful, mezzo-soprano voice of Idina Menzel). I find it hard to let go and I think the reason I do is because I sometimes dwell on things too much. This isn’t helped by the fact that I currently find myself catastrophizing while staring into space, silently spiraling down yet another rabbit hole.

Curiouser and Curiouser

I do question things, especially when it comes to my health. If I am told this is how it is, take this and that, they are the best drugs that will help. I’m like, well we shall see and I will spend time looking into this to see if its true. Of course, I understand that we are all different, but through my own research I do get a general idea. Also, when you do feel absolutely awful your willing to try anything to see for yourself if its effective. However, I am quite sensitive to medication, so for the first few weeks I walked around in a daze worrying that I may fall over, and at times unfortunately I still feel like this.

Diagnosis

When I was first diagnosed with Fibromyalgia, I was also diagnosed with Functional Neurological Disorder (FND). When I was discharged from hospital, I came home and researched both illnesses to try and find out how to best manage them and find ways to feel better, and get myself back to full health.

In the beginning

To begin with, the get better process felt so alien to me, as normally you leave hospital with a plan, or you leave feeling much better than you did when you were first admitted. For me, this wasn’t the case. However, there was a very loose plan i.e follow-ups with a hip specialist, spine specialist and a Neurologist. But the waiting time was vast, and in the meantime I needed to get on with managing medication, something I have never needed to do before. I was also trying to get my head around the fact that my body wasn’t working efficiently and I was and still am afraid that if I don’t stay mobile I will find mobilising even more challenging. So, I make sure I keep pushing myself to do whatever I can.

Forward to today…

I have now seen a hip specialist, who believes my symptoms are neurological. Therefore, he wrote in support of the follow up with the Neurologist.

I have also seen the Neurologist, who wants to do further tests, which I am open to. I want to know exactly what I’m dealing with, so I can get on and find the best way to treat myself holistically.

Work

This past week I was assessed by Occupational Health, who have written a report stating that they feel I am currently unfit for work. Although I found this upsetting, I understand that at this present time I am still dealing with debilitating symptoms and because of my difficulties with mobility I am a health and safety risk in my current role.

I will continue to concentrate on my health and hope for improvement however small it may be. I will keep my spirits up and keep smiling.

I will keep you posted on any further developments. I am interested to know about your journey and if there is anything you found to be helpful.

Much love C x

Yes, I’m really going there. Sorry, not sorry

Constipation

I have IBS and the last couple of years constipation has been a huge issue for me. I think those who suffer with it will agree that its bloody awful! and my new medication unfortunately contributes to it being more difficult to manage.

Today has been particularly awful! tummy pain and for added delight, retention of urine is hindering my day. I sometimes spend time during my day pacing the room and massaging my tummy hoping it will pass.

Trips back and forth to the toilet are unsuccessful and when the miracle finally happens, although relieved I know that for the next couple of days that area is going to feel like I just pushed a baby out of there! (I actually saw my husband grimace when he read that part). I have tried so many different things to help and make it easier, sometimes it works well and other times not so much. However, I’m getting there and am now finding that its not only one thing, but a combination of different things that make it easier and a less painful.

What helps me?

If I keep on top of it and don’t forget to do these things listed below, my body does manage to function quite well.

Here goes…

Herbal tea 🍵 I have made my own personal blend and it works beautifully.

Eat dried, or tinned prunes is a thumbs up (My neurologist recommended – tinned prunes with yogurt in the mornings).

Dulcolax, or Senna is effective. However, I find Senna is more effective for me. Although, it seems to take time to build up in your system.

Pure fruit juices, I tend to go for prune, or orange.

Love Thy Gut organic Prebiotic Super-blend. I have this in fruit smoothies.

Drink plenty, now this one is really important and it really does help. I now have an app to remind me to keep hydrated.

And…

Shit cake, I’m sorry, what cake? Yes you haven’t misread I did write shit cake (I do recognise that this really isn’t a great name for a cake).

It is a mixture of fruit and fibre, my Mums friend Deb gave her the recipe and my brilliant Mum passed the recipe on to me, but not before making it for me on numerous occasions. Thanks mum!

My Mum and her friend call it shit cake and who am I to change a perfectly good name for something that helps support you to have a much needed… you know.

Anyway, it works for me, so maybe it will work for you.

Here is the recipe: (I really hope it’s not a family secret, maybe I should change the name?).

Also, where it says mug. It literally is a mug, not a cup.

1 x mug of raisins (you can also add another dried fruit if you wish, I also added dried prunes to this recipe).

1x mug of all bran

1x mug of milk

1/4 of mug brown sugar

Then let that all sit in a bowl to soak for 10min.

Lastly, mix in 1x mug of self raising flour and pour mixture into a loaf pan lined with parchment paper. Pop it in a preheated oven at 175 for 30-40 minutes. Check after 30 and see how it’s doing.

Get it out of the oven, pop a toothpick in to make sure its cooked through and if done leave to cool.

Slice, spread a thin, or thick if you prefer layer of butter and eat, yum 😋 good for your tum

Soooo good!

I hope your all having a great day

Much love C x

The Woodturners Daughter…

My Dad got into woodturning just before Christmas time and bought his first lathe. He chatted to me about it and I found it fascinating! I didn’t realise how many beautiful pieces you could make yourself. After showing me some of his work and watching some of the fabulous Chestnut Productions demonstrations, I was hooked! We recently attended a local event with his friend Barry. I managed most of the Saturday, but came home earlier than planned. I didn’t make it on the Sunday, but luckily The organiser kindly gave me access via a live online link. So I did not miss out on a thing and watched from home. I was so looking forward to watching The Tiny Turner (Emma Cook) her stuff is beautiful! The centre picture below is some of her gorgeous pieces. I am now looking into buying a lathe for myself, I have definitely been inspired!

Above – me and dad, or should I say me and Darth. Its so nice to share something with him and when I’m doing much better with my driving, I will venture over there to have a go on his lathe. This post is called The Woodturner’s Daughter as it was the name my husband came up with thinking it was funny, but It stuck and I quite like it. So, maybe in a few weeks, I may produce something worthy of the name.

I would love to know what new hobbies, or old hobbies you are enjoying right now.

Much love C x

Hi ho, hi ho, it’s back to work I go…

After much deliberation, during the summer holidays I wrote an email to my manager regarding coming back to work, and what I felt I could realistically do. As always, she was totally amazing and so understanding. She was more than happy for me to come back two mornings a week. I was so happy as I’ve been going stir crazy at home and need to focus on something else other than what I can’t currently do.

First week ☑

This First week was tough, mostly because I find it really difficult to not be my usual izzy, whizzy self. I want to be as helpful as I possibly can, but I’m so slow. Trying to navigate myself and a walking aid, while trying to remind myself to smile, and not get too distracted about what I must look like. Also, am I helping enough? as well as feelings of self doubt, I also worry that my colleagues are thinking – oh dear, well this is going to be fun… NOT.

In all honesty, everyone has been so amazing and I feel very lucky to have such a supportive team around me. I feel so welcomed. Now, I just need to work on giving myself a break and do the best I can without breaking.

What has helped me this week..

1. Getting up early to give myself time to get ready, take medication and eat something healthy and filling for breakfast.

2. Decaf coffee (I love the coffee bags from M&S)

3. Research on natural pain relief and alternative medicines.

4. Online food shopping

5. Seeing friends

6. Epsom salt baths

7. Reading like minded Blogs

I know that some find it impossible to work due to the nature of this illness, even the thought of navigating and managing work can be exhausting for some. Others, are still doing 40hr weeks and are at the point of breaking because they have no choice but to continue due to financial commitments. I love my job, like many of you do. It gives me a sense of purpose and I love to be helpful. I want to continue to do my job, but if it does become almost impossible what else can I do, other than write this blog, which is fulfilling in its own way. I hope it brightens someone day in some way.

I would love to hear about your stories with regards to work. How are you managing day to day? What works for you? What helps?

I hope you all have a great week! C x

When its an ice-cream kind of day!

Bring on the gelato!

Today has been a good day! hubster took me out for chips and a marvelous, chocolatey treat! there were so many different flavours to choose from, I haven’t had that kind of choice since we visited Italy many, many years ago.

I am getting better at managing my good days and not so good days. I think that its also got a lot to do with confidence. Up until now I have not found it easy to go out and enjoy myself, as I was too preoccupied with the thought of seeing someone I know. Whereas, I am now coming to terms with my diagnosis and have an understanding of when my body needs to rest. I am managing my pain to the best of my ability, sometimes its hard, but I will not stop trying to live and enjoy my life even when it is challenging.

Its about celebrating the wins and although being wheeled around in a wheelchair is not my favourite thing, today is a day time out, out day and I enjoyed it! Every day is different and I’m trying to embrace all of it. Even when I feel beaten, I still try to do something productive, something small. Sometimes it can be something boring like hanging out the washing and making dinner. I try and set myself achievable goals, so that I feel like I am winning at something.

I hope you have all had a good day

C x