Summer time madness!

I haven’t put up a proper post for a little while. I hope your all doing well. The weather here has been amazing, I cannot remember having a summer like this for some time. I have actually welcomed the rain when we have had it, as garden is parched!

How am I doing?

I am doing well! I have good days and not so good days, but my confidence is growing and going out on my own doesn’t feel as daunting! I have fallen out of my chair a couple of times, but I got myself up and back on the horse (I think that’s the correct phrase). Bloomin’ Wild Tea is keeping me occupied and I am slowly getting to grips with the day to day running of a very small business. I have continued to do the farmers markets and have met some really lovely people at the stall. I have sold tea and had some repeated business, which is fantastic!

So far, I am enjoying the experience. However, some days I feel a little overwhelmed! The truth is, I am not what the business world would call a natural seller, so I find the roll up, roll up come and buy my tea a bit challenging (I don’t really say, roll up, roll up, but you know what I mean). It’s all confidence building, so the more I do it, hopefully the better I will get. I am currently working on a website and will soon have it ready to launch! Its all very exciting!

My friend from across the pond

My lovely friend Sarah came to visit from Thailand, it was so lovely to give her a hug and chat in real time. We enjoyed each others company while we sat overlooking the sea, on a beautiful summers day. She is now back in Thailand and we have already resumed our voice messages. It’s a friendship I cherish.

Happy Place Festival

Me and my sister from another mother went to the Happy Place Festival! It was amazing! I met some gorgeous people there! Lauren from Luminosity_glitter! The lovely lady from tonic CBD! The beautiful Sophie Morgan and the gorgeous Fearne Cotton! We had the best time! It started off a little tricky with regards to parking and accessibility. However, this was dealt with promptly and in all honesty I was so excited to be there I moved past it pretty quickly!

Plus, the wonderful Penelope came and gave us the best gift bag, which left us with such a warm feeling. I had booked workshops singing with the amazing Jambo! and a Canopy and Stars experience. It was the first thing I’ve felt brave enough to go to, and I was so happy that I did because it had me buzzing for days afterwards!

I am currently reading Fearne Cottons ‘Bigger Than Us’ book I’m enjoying it so far and will leave a review soon, I have two others waiting in the wings, there isn’t enough hours in the day! I’m always open to book suggestions, so leave a comment if you have read something amazing recently.

Wedding of the year

Our gorgeous friends Laura and Ryan got married! It was such a beautiful day! We all went as a family and watched them say their vows. It filled my heart with joy! Laura looked stunning in her dress and her hair and flowers reminded me of the beautiful Frida Kahlo! I have put a few pics up in a previous post. It was joyful!

This weekend Matt and I are going to London for a little break. I am really excited about it, but also a little apprehensive as I have no idea what travelling round London as a wheelchair user will be like! I guess I will find out soon enough. Any tips would be greatly appreciated! 👍

I hope you are all doing okay and hopefully my next post won’t be another 2/3 months. I am on Instagram if you would like to follow me on there @cassiedearbody I post regularly and also @bloominwildtea 😊

Take care, much love C x

Bloomin’ Wild Tea

In my last post, I said that I would be letting you in on my new venture! I am so excited to share this with all of you. My business Bloomin’ Wild Tea came to fruition early this year, and I did my first proper event on Saturday at the local farmers market.

Herbalism Studies

Over this last year, or so I have been studying herbalism. My thirst for knowledge, led me on to course after course, and book after book. I have always loved alternative therapies and medicines! from a young age I would seek out natural creams, facial washes and toothpaste. When our daughter was born and she started teething, I went straight to the herbal shop and bought a herbal powder to ease her discomfort. I would always try and steer away from prescribed medications.

My Apothecary

When I started to need prescribed medication last year, I sought natural ways to deal with some of the side effects, one being constipation. I used the knowledge I learnt from my studies and bought myself a small amount of herbs to blend myself a tea.

That small amount herbs turned into my very own apothecary!

Tummy Tea

Tummy tea was my first herbal blend and it worked a treat! I threw away the bottle of lactulose and drank my tea. I tasted each individual herb and jotted down notes on taste and how I felt afterwards. I then went on to make a well-being tea, and a calming tea blend.

I came up with a name and designed my own logo, I took it all slowly, which was key for me. I enjoyed it all, it gave me a focus. On days when I felt awful, I would rest and sometimes jot down ideas. On better days, I would blend and taste different tea blends, it was like a little witches kitchen and my bread making bowl was my cauldron!

Support

I did not do this alone, I had help from my gorgeous friend Sarah, who although lives over the otherside of the world, made time to listen to my ideas and offer helpful advice which was amazing! She also designed my leaflets and posters to take with me, to make my stall look pretty! and give much needed information on my teas. (Just need to sell a few more teas and I’m buying my ticket to come see you 😉) and of course my wonderful husband, who set up my stall on Saturday and has gone through many taste tests! Other family and friends also did taste tests, and helped in other ways, which was fab!

I hope to start private consultations soon, but until then, if you would like a pouch of tea come visit me at the farmers market in Whitstable.

I have started an Instagram page:

http://Instagram.com/bloominwildtea

Also, a Facebook page:

http://facebook.com/bloominwildtea

Please come and check those out, there are some tea recipes and other bits and bobs you may like.

I hope today is being kind to you all.

Sending much ❤

C x

Heading in the right direction

It’s been a little while since my last post and there has been much progress!

I now have my new wheelchair! Which is so amazing! I am now waiting for a Smart Drive, and although this may take some time, I am enjoying my new-found freedom!

My chair is extremely lightweight which means I can get it in and out of the car by myself! Whoo, whoo!!

Freedom!

A step at a time

I am taking every day as it comes and over the last few weeks have become more accepting of my new life as it is now, which is huge in itself. This has meant that I can now see my mobility aids as freedom for myself. Over this last year, I have learnt a great deal. I have spent time putting love and care into long lasting friendships with people who are dear to me, also discovering new ones on platforms such as Instagram! (most surprising!) there are so many battling chronic illnesses! I am so pleased that I chose to access information, and reach out to people with similar difficulties. I think if I hadn’t I may be in a very different place right now.

Since seeking out information and becoming part of the disabled community, I have discovered that I harbour a considerable amount of internalised ableism, and by being aware and following awesome disability advocates, I am gaining insight into what it means to be disabled in 2022. I can tell you that although there has been change over the years, it’s no where near enough!

Never give up the fight

Being a mama bear, I have had to fight so damn hard to get support for both of my children over the years. My son and my daughter have Educational Healthcare Plans, (EHCP) to help support them through school and life outside of school until they are 25 years old. I am incredibly lucky to have such amazing friends in my life, who helped me through that period and it absolutely was a joint effort in every sense. However, I think of those parents who don’t have that support, or inclination to even know where to start. Access to services isn’t as straightforward and waiting lists are vast. I will put some links to places that you can find support to help with form filling with regards to EHCP’s for your child on the resources page.

Over the last few months I’ve had to fill out ridiculously long forms to get support for myself, and trying to navigate my way through that has been challenging! and again, I think of others in a similar situation with little, or no support. Those who are on their own and don’t have a clue where to start with PIP forms, or accessing other forms of support for themselves. Like I’ve said before, Its a long old process which is exhausting and utterly frustrating! I will put links to organisations and websites that may help support you with getting support for yourself on the resources page.

Honestly, I’m fine

When it comes to fighting for myself, or having what I need. I’ve always been like, “oh well, nevermind that will do, I’ll be fine. I am fine, everything is okay!” Therefore, the last year for me has been a very interesting one. A combination of I’m fine and that’s really hard, but I’ll be okay, to I’m not okay at all what the hell!! I’m drowning over here, lifeboat please!! Brave face, brave face 😬

It’s okay to not be okay

I am meeting and talking to people who are not afraid to say, I’m having a really shitty day, and I feel like crap!! It’s refreshing and I feel more at ease saying, god me too! I feel rubbish! It’s absolutely okay to not be okay, to have an awful day and bloody well say it! I know there are people out there like me that have negative thoughts i.e think that if I say I’m not okay, or talk about how rubbish I feel then I’m not an attractive friend to be around, or the cool mum, or the spontaneous wife. I’ve had all of this going through my head over the last year, it’s entirely unhelpful and completely untrue. If you are feeling this way, find something postive and achievable to do in your day. I find gardening therapeutic. Self care is so important, try and make time for yourself.

I have found solace in reading other inspirational stories. Fearne Cottons ‘Happy Place’ podcast has been an amazing resource for me. Every interview is insightful in some way and is always packed with tips, or other resources to help you on your way. I recently listened to her interview Sophie Morgan, whose book ‘Driving Forwards’ (an account of her life since her car accident when she was just eighteen years old) has recently been published. Immediately afterwards I bought the book and when it arrived, I devoured it in next to no time. It is an incredibly inspiring story, with a very clear message and I heard it loud and clear. It’s an ongoing beat of my heart through life – never give up! Just keep going! (I’m sure there’s a song in there somewhere).

New venture

I have exciting news that I will be sharing in my next post, so hold on to your hats folks!

I hope everyone is doing okay, sending much love as always to you all! 💗

C x

Fund raising

A lot has been happening since I wrote my last post. After exhausting all avenues to try and get a wheelchair, we decided to go down the fundraising route. Encouragement from family and friends, helped me to come to the conclusion that fund raising would be fun! And it would obviously help get me closer to my goal of having my own chair.

One of my friends, offered to run into the sea every Saturday! (Love you Lainey). We settled on a justgiving page, and renting a village hall for an afternoon in April. Further ideas of dressing up and wheeling me along the Tankerton seafront was also mentioned! I mean, who doesn’t love a bit of dressing up! Although, it’s a wee bit cold, so I may be going as Tubacca!

The written piece on the justgiving page, was lovingly put together by my beautiful friend, and sister from another mother Christina. Since it launched, we have been completely overwhelmed with the kindness and generosity of others. I have truly been touched by the messages that have been sent to me personally.

Thank you to all that have donated so far, I love you all!

https://www.justgiving.com/crowdfunding/chair-for-cassie?utm_term=B6nm6enXd

I’m still here..

I haven’t written a post for a few weeks now. I’m still here bumbling along, at a very slow rate. During this time I have been doing my best to stay mobile, however some days are a real challenge and I am becoming more reliant on the use of a wheelchair. Matt is home at weekends and we sometimes go out depending on how I feel. I am becoming more accepting of my limitations, but some days I still mourn the loss of my old life and that in itself can be draining.

Instagram connections

I have found myself very settled on Instagram. Making connections with others, who have similar challenges. I have found it quite comforting! I have noted some fantastic snippets of wondrous resources and information such as: compression socks (who knew that tightly fitted, up to the knee socks would help) but they do! Also, I am finding some truly beautiful people on there, that despite their challenges, find humour in the every day. They find ways of cheering up others, with anecdotes of themselves and I love that as I like to do that too!

Follow-up appointment

I have recently had an appointment with the Neurologist, we are still waiting for results from the genetics test I had in September last year! Everything is backlogged here unfortunately, it cannot be helped. Adult Social Services have also still not been in touch. Therefore, I am still unable to get out of the house independently as I need a permanent ramp fitted. I also need a stair rail and a shower stool. Waiting is hard, but I need to be patient.

Wheelchair Services

Today, Wheelchair Services are coming out to assess me, I have no idea what to expect, but find that these days appointment times can mean waiting for someone to arrive between the hours of 9am and 4pm. I was told that they will be bringing a chair with them, so I’m not feeling that enthused by that. Mostly, because I hired two different chairs from the Red Cross and I was hoping this will be a better chair, one I can manage. We shall see.

Winter

So far, Winter hasn’t been too bad. I have been so grateful for sunny, dry days as it has enabled me to get out with Matt at the weekend. Lola (electric chair) doesn’t fair too well in the rain for obvious reasons. I definitely do not fair well in the cold either, it make everything feel so much worse.

Hanging on in there!

I have thinking about the future and what I can do to keep brain ticking over. I have ideas and I will share them when I feel more confident about how I am going to manage things. One step at a time, I need to keep that in my head. I’m doing okay. Life is very different and I’d be lying if I didn’t say that I am still mourning my old life. There are good days and not so good days that’s the joys of life I guess. Still on the ride, but a completely different rollercoaster!

I hope everyone is having a beautiful day!

Much love C x

Christmas holidays..

I hope everyone had a wonderful Christmas break. Ours was calm and quiet. My lovely friend Christina came to us for Christmas dinner and everything was going beautifully, until I dropped the pan with scorching fat ready for the roast potatoes down my arm and side. Determined not to let it ruin the day, we patched it up best we could, well Christina did and thank God she did! and thank God for lavender essential oil! Its amazing! So, I’ve spent every day since smelling of this wonderful aroma and wrapped in cling film (Just my arm, not whole body obvs). 🙃

The lead up..

The run up to Christmas, with regards to Christmas present buying went much smoother than I thought it would. Matt was an absolute star! and we did everything together, mostly online and a few bits from nearby shops. In the past, pre-Christmas craziness would result in me running around like a headless chicken, trying to fulfill my children’s dreams making it all twinkly and lovely. However, this year was different! I had to keep reminding myself that we would still have an amazing time, I just needed to pace myself and I did. Although, I didn’t quite manage it on Christmas day. I still find it hard to ask for, or accept help. I think that’s going to be an ongoing challenge for me.

Further news..

Since my last post, I have had another call from the Social Prescriber, she is a really lovely, helpful lady. She went through some treatment options for the new year, which is good news. Although, one of them is in Canterbury and I really don’t know how I will manage it, in terms of getting there! Nevermind, I will think of that when the time comes. I had a perching stool delivered to help me in the kitchen, and am waiting for a call from social services. They plan to come out and assess me in the house, to see if there are any modifications to help make things easier. Of course I am extremely grateful! However, it’s still difficult to comprehend that I need these things, life truly is different. I am no longer upset about it (I mean, there are times, but so much less than before) I am mostly embracing it and managing the best I can. My instagram family are amazing! They may not know they are my Instagram family, but they are! I am finding that connecting with others, in that space is an integral part of my day. They are all amazing!

Personal Independence Payment (PIP)

I have also had an assessment for PIP. This did set me back a bit, I hated every minute of it! Having to talk to someone about all the things that are challenging, was a far cry from the person that used to say I was fine, even when I really wasn’t fine. I would power house on through, sometimes feeling like complete and utter shit, but I was still ‘FINE’. Myself and a lovely friend of mine used to have this private joke, we would accentuate the ‘fine’ and would sometimes add in a little eye twitch to go alongside our ‘fine’. We always supported each other through our fineness, it is something we still laugh about. Anyway sidetracking, the PIP assessment was awful and I was pleased to get it over with, we shall see what happens.

Keeping my brain ticking..

At the beginning of this month, I started a little online course, in a subject that I have been extremely interested in for some time. So far I am loving it, it fits in with my day and I can pick it up and put it down when I need to. I got a few books for Christmas to compliment and support my studies, I will let you in on that very soon, as it seems to be taking a very interesting turn.

But, its Christmas food!

I have eaten my body weight in Christmas everything! Bag of doughnuts = Christmas doughnuts. M&S biscuit selection= M&S Christmas biscuit selection 😋 and so on! We have all indulged, me a little too much! Christmas food has gone alongside everything, watching a Christmas movie = sweets. Playing Christmas games = nik naks i.e nuts, crisps, cheese and biscuits we have definitely kicked the arse out of it haha!! I think everyone does that right?! 🤔

Christmas magic music

Our daughter purchased her first vinyl record this Christmas, and her dad is beyond excited! If you have checked out the ‘music maestro’ page you will understand why. We also bought her some vinyl, it was lovely to watch her using the turntable and getting into the groove. Her brother, not so interested yet. He quite likes Anime and getting him a firestick and subscription to Crunchy Roll was his best present. What makes my Christmas magical? spending time with my family, I think if this last year, or so has taught me anything its love them and hold them close.

Happy New Year to you all!

Sending love as always

C x

Overwhelm… what helps

Happy Friday!

I hope everyone has had a great week and have lovely plans for the weekend. There is a lot of Christmas shopping talk in our house, not from me, I’m definitely not there yet. My daughter is asking us for our Christmas present ideas! I like to ease myself in with some Christmas music and I am still playing Joni Mitchel on the record player. Maybe I need to get a tree this weekend. I wonder how many of you already have your tree up? Would love to see a sparkly tree pic in the comments.

This week has been a challenge. At the beginning of the week, I felt wrapped in a blanket of anxiety and as the week played out I found I was becoming more overwhelmed. Last night I took myself off to bed to rest in order to hopefully wake up today feeling refreshed and ready to start a new day! I have said, “it will be fine a lot this week and I do believe it will be, but when your in the middle of it you can feel completely suffocated. I have definitely felt like that this week. I have been quiet and less sociable and I’ve not been able to get my head around doing certain tasks.

I do recognise when I am feeling stressed, anxious or overwhelmed. However, what I am not always aware of is how I got there. For me it tends to be a drip, drip, drip affect, until suddenly that light backpack I started off with, feels like someone has just shoved a couple of enormous boulders in it!

More form filling 🤦‍♀️

I conclude that form filling sucks! It’s all new to me, and I don’t know an awful lot about how to get support, even though I have looked at websites, it’s still a minefield! i.e finding my way through forms that need to be filled in, to help us get support while I am not working. I am having to write down personal information about how I am finding life now that I have a disability. I don’t want to have to justify why I need help, or indeed that I do need support at all. However, I am slowly getting there by completing a bit at a time.

How do others manage??

My husband called during the day and I said, “I really do not know how people manage to complete these forms. They are extensive! the one I am trying to do a bit at a time is 24 pages long!” I will tackle some more today and then finish it together at the weekend. I can imagine people struggling with no support whatsoever would not even know where to start with some of this stuff.

I understand that services are inundated with people who need support with this kind of thing, they are doing their best. I tell myself that while I wait, and I am grateful when I manage to get through to someone helpful.

Words of wisdom

My husband has this saying, which more, or less goes like this- get the stuff you really don’t want to do started first thing in the morning. Get it out of the way and then it’s done and you feel like you have accomplished something. He says this to our kids, regarding homework and chores. I have heard it quite a lot and I look at the kids with this encouraging nod, indicating that I think their Dad is wise and I agree.

Even though that saying does seem to make sense. It does not work for me at all! For instance, I’m sitting here writing this at 8am and what I should be doing is filling out a couple of long winded forms, in addition to making a few phonecalls to organisations that will have me waiting in a queue, with goodness knows how many other people. Quick tip though, as I have been caught out with this, make sure you visit the loo beforehand, as sometimes the queue isn’t as long as you think and all of a sudden you find yourself in the middle of a wee, when a cheery voice suddenly chimes in with a rehearsed company welcome.

What helps me

So, what have I done to help myself feel a little less overwhelmed this week?

Meditation – find a quiet space if you can, it doesn’t have to be perfect, it can be your bedroom for a few minutes with your phone on YouTube for 5 minutes i.e something like this: https://youtu.be/inpok4MKVLM or this: https://youtu.be/k0PSUDvLi8E

There are also apps like: https://play.google.com/store/apps/details?id=com.getsomeheadspace.android

Do something you enjoy. Do you get a sense of achievement when you bake a cake? (sweet stuff is always my go to when I feeling a bit less perky). Or, maybe you like making savoury food. I love making homemade pizza, or bread, I find it therapeutic.

Do you enjoy being creative? I made some Christmas decorations recently out of clay. Our son also sat down and made some Christmas owls with me, (I’m not sure owls are a Christmas thing, but we had fun making them) it was a lovely opportunity for us to spend time together.

Also, seeing a close friend that you feel comfortable and happy around, a person that will lift you up can be a wonderful way to unwind. Laughter really is the best medicine.

Whatever you decide, be kind to yourself.

Have a beautiful day, sending so much love.

C x

Getting the help you need

Make notes

Since the beginning of this year, I have made it my mission to document everything. I want to remember this journey as I think it’s important to make notes on what happened at the beginning of this year, and how it impacts on my daily life. For example: What is difficult? what happens when I do this? or that? Also, to include any new symptoms so that I can inform whichever specialist I am seeing. Furthermore, my intention is to provide them with what I regard as important information about my health, so that the doctor/specialist will start to piece it all together. Therefore, giving them insight that inturn will hopefully enable them to see the bigger picture. It has also really helped me to remember.

Appointments are a way off and I want to make sure I am ready to communicate how challenging this last year has been. I feel that it is vital to have the correct diagnosis, so that I can receive the right treatment to help me in the long term.

Spanner coming, sorry

However, (not to put a spanner in the works) it all depends on who you see! You could see a wonderful doctor/specialist that will ask you how you think things are going, and is more than happy to sit and listen to your concerns, but you may get someone who you have spent six months waiting to see, that has no time to listen to you, no empathy, or understanding and you end up closing the door behind you feeling upset and angry.

I have experienced this in the past, and it has been those moments that have spirred me on to make sure I advocate for myself in the best way possible! Someone once said to me – they are just like you (talking about a manager I once had) they have a label of manager, but they are no better than you. It’s just a title, don’t be intimidated. Say how you feel, tell them what you think. You are amazing, your feelings are valid. Doctors and specialists are no different, if they are not listening and shut you down when you try to talk to them, you are well within your right to rise up and ask to see someone else. However, you may be in for another long wait, but it may be worth it. I do know that some people do book private appointments with the specialist of their choice, and that may be an option for you. But, if you are waiting for an NHS appointment the waiting times at the moment are vast and it’s completely out of your control.

Unfortunatly, it’s a waiting game

I spoke to the Neurologists secretary (a lovely lady) this week to ask if my blood results were back from Guys Hospital in London.
The Neurologist sent off my blood to be tested for Hereditary Spastic Paraparesis (HSP) Her reply was, “I have called them, but unfortunately because of the back log you will not receive your results for six months!” All I could say was, “oh okay, thats that then, I’ll stop pestering you now” I joked. She laughed and reassured me that I could call anytime and that she would do her best to help. We then said goodbye.

I couldn’t help but feel despondent. It’s so hard to wait, it’s been almost a whole year! A year of pain, not being able to walk properly, on another level fatigue, dizziness and weakness. All of a sudden it all creeped up on me and I just sat there and sighed. It’s all up to me, I have to do this for myself, no one is going to swish a magic wand, there is no instant fix.

And then this…

I got a call, on the same day from a lovely lady from the health centre. My doctor had referred me to her last week. She was calling me to see how I was getting on. So, I began to fill her in best I could about the challenges I now face eight months after my hospital admissions. She asked me specifically how I was managing with everyday tasks, no one had asked me about these things before. With a heavy heart I told her that standing makes my legs hurt when trying to make dinner, standing in the shower was challenging, and how climbing my stairs was another great feat at times.

She simply said, “you need a perching stool so that you can sit level with the kitchen worktop, would you like one?”

“Really? You can get one of those for me?”

“Yes, and do you want something for the bathroom?”

I couldn’t believe it! I actually felt emotional! I had been trying so hard to do these things, not wanting to complain, just trying to get on the best I could, to feel like my old self. Now, someone was saying – no wonder you are struggling with these tasks, you need help!

She also offered therapies to help i.e a chair yoga group close to where I live, a gym specifically for people with neurological conditions and counselling should I want it. She said, “I will make a referral to Occupational Health, and someone will be in touch regarding a visit to see if you need anything else to help you around the house.”

I took a deep breath, if she had been sitting next to me I would have hugged her, this wonderful stranger who really had made my day. I thanked her profusely for her time and help. She organised another date and time to call me to see how things were going.

Social Prescriber

Her name is Debbie, she is a Social Prescriber and in just under hour she had validated my feelings, empathised and understood how challenging life had become, and then told me how she could help. I had never heard of a Social Prescriber before, and I wonder if any of you have? It could be a lifeline for many of you who need support, and resources to help you manage essential tasks around the house.

After the call I felt a lot lighter. I just need to hang on in there. I will keep you updated and let you know how the Occupational Health visit goes.

Sending much love as always

C x