When I wake up in the morning, before I stand up, before I even sit up. The world is my oyster and I can do anything I desire. Before I stand and the pain starts , I am queen of the world.
This morning, I woke up and googled sea kayaking in Lanzarote. We’re having a few days away over there and I’m obsessed with kayaking! By that I mean that after my last surgery I spent every day in hospital dreaming of kayaking. I’m not sure why as I’ve only ever been on one once. But the fear of never leaving hospital was huge and when I meditated, I imagined being sat in a kayak with my husband on a calm serene lake with the sum on my face and it’s what got me through.
So this morning, before I got out of bed I searched for these kayak adventures of coastal exploration and snorkelling.
I thought about what I want to do today, starting with a long dog walk with the pups.
I thought about a big old clean up at home, mopping the floors and hoovering the stairs.
Going to pick up some gorgeous fresh ingredients and cooking a big leg of lamb and a sunday roast, inviting friends over.
Heading to the gym for a good work out, maybe a yoga class and then chilling in the spa after.
Before i get out of bed, I can do anything. And that’s why I’m putting off getting up. I’m laid on my side typing this on my phone because once I stand up, the dream is over.
Once I stand up, it feels like my tummy is going to open up and fall out. Without wearing support garments, its hideously painful. In the last op they did a huge abdominal reconstruction and honestly it feels worse than before now. I am going to see my consultant in a few weeks.
So when I stand up, all my dreams flutter away. My choices narrow, the plans have to begin. It’s not that I cant do any of these things, but its picking one. And then putting on support garments and planning when I take painkillers, getting the balance of proper pain relief without being zonked out. It’s not simple, or independent. It becomes a task to complete.
Before I get out of bed, anything is possible and life is much simpler. So I might just stay in bed dreaming for a little longer.
https://www.sobadass.me/wp-content/uploads/2019/09/20190929_090258_0000.png312820samhttp://www.sobadass.me/wp-content/uploads/2015/09/sobadasslogo.pngsam2019-09-29 09:06:232019-09-29 09:07:08Before I get out of bed
Something that I have learnt over the past few years is just how tiring it is to be in pain. When you have ongoing, daily pain, it takes up so much energy both emotionally and physically. I don’t think people really understand just how exhausting it is to live in pain.
It is so hard to pinpoint which aspect of having a chronic illness that is causing fatigue and exhaustion. Is the tiredness a thing all on it’s own? Is it due to the sleepless nights, the pain or is it an emotional reaction? I think for me, it is a combination of a lot of things, but I am sure that the pain makes things so much worse.
I am in almost constant pain right now. The last surgery doesn’t seem to have worked and my stomach is swollen and misshapen. It feels like my insides are falling our both forward and downwards. I have to wear multiple support garments and take strong painkillers all the time.
I am so tired. I feel thoroughly exhausted. And I am sure that a lot of this is due to the physical pressure of constant pain. My body is working overtime to deal with it and the exhaustion of pain is so draining.
Tiredness and exhaustion is often overlooked as a small side effect, but it effects every single part of your life. Work, family, friends, intimacy, diet, exercise. How can you cook a healthy meal (even though you KNOW a good diet will make you feel better) when you are so tired, you can’t get out of bed, never mind get to the kitchen and stand and cook.
And it really effects my mood. When I am in pain and tired, I find it hard to be patient. I feel so down on myself and everything around me. I feel like I am weak and powerless and it sucks.
There are of course medical reasons for tiredness and if you are experiencing new tiredness with no reason, you should see a GP. Unfortunately for a lot of people with chronic illness, tiredness just becomes a way of life.
I suppose I am just trying to find a way to explain this tiredness to others. I worry people think I am lazy when I spend my time in bed. Or that I am rude when I am yawning and dropping off. But can you remember a time when you have been really poorly, and that draining feeling where it feels like every ounce of your body’s energy is being used up fighting illness? Well that’s how I feel most days.
Exhaustion is something I need to learn to live with, but today it all just feels too much.
When my son told me he wanted to go to University at the beginning of this year, it threw us all into a bit of a panic as he had always said he didn’t want to go! We were miles behind in planning, hadn’t done any of the Uni open days and as neither Timm or I went to university, we didn’t have a clue!
We buckled down, got some visits done and he filled in all the applications. We went through so many uni websites trying to decided which would suit him best and eventually decided on three options.
He did well at college and got into his first option and so we started to plan for the big move. He decided he didn’t want to go into halls. His friend was starting his second year and they decided to get a house together. After much searching, and house visits, they decided on one and finalised plans to live there. Student financing was sorted and he was well on his way!
And then I started to think about all the stuff he was going to need and felt totally overwhelmed. But after a lot of research we pulled it together. Here is my Uni Packing list for parents.
https://www.sobadass.me/wp-content/uploads/2019/09/journal-791286_640.jpg426640samhttp://www.sobadass.me/wp-content/uploads/2015/09/sobadasslogo.pngsam2019-09-12 06:30:582019-10-11 17:34:06The University List - a parent's guide to what to pack for Uni
I have three teenage children aged 14, 16 and 18. It is such a shift as a mother to move into the teen years. The things that they need you for change as does your whole relationship. Over the summer, my 18 year old went to New York for 3 weeks on holiday and my 16 year old spent two months in Australia with my sister and so it has been a very odd year!
When the kids starting talking about going to travel, I was all for it. I truly believe that travel broadens the mind, the spirit and is a positive thing. When the time actually came round, I felt a lot more nervous about seeing my bambinos go off into the world. I was scared, worried and tearful. This is when I was told about roots and wings.
The Dalai Lama said “Give the ones you love wings to fly, roots to come back to and reasons to stay”
I’m proud that my kids have the confidence to fly the nest and explore the world. I know they will always have my roots to head back to if they need me and they know that I love them and I am always their biggest fan.
I have really had to remember this quote this week as my eldest has left home and moved to Leeds to start university! He has moved into a house with his friend, he has a new job and will start his degree course in a couple of weeks.
The move to university
I have been collecting things for the move for months. Pots and pans, tins and packets, bedding etc. I have made him a little notebook filled with his favourite recipes from home and hints and tips for living alone.
We drove him over to his new home and helped him unpack. My heart was in my chest but the last thing I wanted was to make this exciting day about me. So I held in the tears and smiled as we unpacked with him and got him settled.
Then the time came to drive home. I hugged him tight, told him I loved him and we are always here for him and drove away.
I cried pretty much the whole way home!!!
Honestly, I’m not sad. It’s weird as I am insanely proud of him and I am so excited. For a lad who really disliked school I am shocked that he chose to go to Uni. But I am really looking forward to seeing him grow, mature and have a whole lot of fun.
Time to fly
I suppose the tears are because of change. This is it, the time where he is no longer my baby. Of course he will always be my child. But even if he chooses to come and live back at home in three years, it will never again be the same mother/child relationship. He will be 19 in a week! Our relationship has now shifted and it is scary. I hope I have given him enough love, wisdom, guidance and care and he will fly now.
We tend to relate events back to ourself and I left home at 14, sleeping on peoples couches. I was basically homeless till I was 19. Though I did move back home once or twice, it was years of living with family members or on friends couches. So my experience of leaving home is tied up in fear, pain and loneliness. I have to remember that it’s not my kids experience. Charlie is going off into the world with all our love and support and he cannot wait!
So roots and wings, I keep reminding myself that leaving home is a part of growing up. I have done this part of my job as a mum. I will always be mum. It’s just a change in what he needs from me now.
You never know the last time
I was told years ago “you never know the last time”. The last time they will sleep in your bed, the last time they will hold your hand as they cross the road, the last time they will need you to chase away the monsters under the bed. Treasure it. The past 19 years have gone in the blink of an eye.
https://www.sobadass.me/wp-content/uploads/2019/09/IMG_20190907_201518_865.jpg23792379samhttp://www.sobadass.me/wp-content/uploads/2015/09/sobadasslogo.pngsam2019-09-11 06:31:562019-09-10 15:35:52Roots and Wings - when your child goes off to University
Today is a bit of a different post for me, I want to talk a bit about racism.
Let me introduce myself
My name is Sam Cleasby and I am a British woman and my heritage on my mother’s side is Mizo.
Mizoram is an eastern state of India. “Mizoram is one of the states of Northeast India, with Aizawl as its capital city. The name is derived from Mi (people), Zo (lofty place, such as a hill) and Ram (land), and thus Mizoram implies “land of the hill people”. Like several other northeastern states of India, Mizoram was previously part of Assam until 1972, when it was carved out as a Union Territory. It became the 23rd state of India, a step above Union Territory, on 20 February 1987, with Fifty-Third Amendment of Indian Constitution,1986.”
My family history is long, varied and something I am proud of. Yet because my skin is lighter than some, and I look less like my mum and nan than my dad I live in a weird societal time where people unaware of my heritage voice inappropriate and racist comments in my presence and where I feel a responsibility to counteract those thoughts.
Yet so often I have been told when voicing these opinions that I have ‘a chip on my shoulder’.
There are the overt, hate filled, angry red faced racists in this world. Generally you can see them a mile off and we all tend to avoid them. Most people arent blatant in their racism.
But it’s the quiet ones that concern me. The “I’m not racist buts”, the inappropriate racially motivated jokes ones, the “so WHERE are you from” ones, the slipping the odd word into conversation ones. It’s the everyday racism, the micro aggressions, the daily reminders that you aren’t white.
These are the people who distress me the most as sometimes it’s really hard to recognise them, and sometimes you get totally surprised that it is someone you wouldn’t expect.
A while back, someone was chatting to my husband Timm and he used the word ‘p*ki’ . He was totally taken aback and shocked and walked away from the conversation, he was upset and asked “what should I have said to him?”
A friend had a similar situation where someone used a racist term in front of them. They were upset and uncomfortable but didnt know what to say.
People have said to my husband “ohhh what’s it like having an Indian wife? I bet you get some great curries!” These arent hate filled bigots, they aren’t trying to offend, but honestly being othered like this is very wearing.
What do you say?
And I think this is a problem. It often can feel like you’re making a big deal, causing a fuss if you call people out on inappropriate language. It can feel embarrassing and upsetting.
But try being the brown person on the receiving end of racism constantly. At least once a week, someone comments on my “tan”.
So often I’m asked “where are you from?”
“Sheffield” I respond. “No but where are you FROM?”
“Ermmm I grew up on Norfolk Park”
“Ok, where’s your mum and dad from?”
“Ohhhh sorry I get it, you’re asking me why I’m not white!”
It feels very devisive and othering. And I know I have much more privilege than other BAME people who face far, far worse than I do.
As someone who can “pass” for white (and I do hate that term”, I’m privy to conversations that people whose skin is darker than mine probably dont hear. And its depressing.
For years, I felt embarrassed in these situations. Like I would be the one to ruin the dinner party by questioning the guy pushing me on where exactly I’m from. Or spoiling the social event by calling out someone dropping a P-bomb.
I felt like I was causing a scene to explain to the woman at work that telling me she was having a “chinky” that night was offensive.
I felt like I was embarrassing someone who assumed I would like a spicy meal because of ‘you know’ and waving a hand over me, presumably referring to my skin colour and background.
But I’m done with feeling embarrassed by this. It’s time I voiced my feelings. The person using these words should be the one to be embarrassed not me.
There is so much more I could write about on this topic, especially in the political climate of the world at the moment. But for now I’d just like to say that we all need to feel less intimidated in calling out the bullshit around us.
It’s ok to say “I find that term inappropriate, upsetting and offensive.”
It is ok to walk away from a conversation that you find wrong.
It’s ok to be upset by racism and it’s ok to talk about it.
So much has happened since then. I have had 7 more surgeries, a jpouch, a jpouch removed, multiple hernias, fatigue, joint pain, months in hospital, my butt removed and 3 more ileostomies!! I have also gained so much, I started working for Scope and presenting for the BBC. So Bad Ass reached well over 3 MILLION views and had many amazing opportunities. I have worked with Crohns and Colitis Uk on their campaigns. It was amazing to be named as one of the 100 most influential disabled people in the UK. I have spoken at events all over Europe and the UK and met some wonderful people!
Some things haven’t been great. I never knew that first surgery would set me off on a path to 7 more in 6 years. Sometimes, it has felt too much to bear and on more than one occasion I have wondered ‘why me?’ I have seen people I thought loved me leave me. I have felt more alone than ever in my life. Like the burden of my illness was too much for those around me.
Through it all though, the ileostomy bag really did give me a life back. It has given me back control and allowed me to travel the world and actually plan things in with my family. If I could do it again, would I? Well hindsight is a wonderful thing. Maybe if I knew the pain I would face over and over again, I would have been too afraid to go ahead with the surgery. But maybe the outcome would have been very different if I hadn’t had my colon removed. Maybe I wouldn’t still be here, or maybe I would be here but still sat on the toilet 20 times a day in tears?
What advice would you give yourself?
None of us have a crystal ball and we have to roll with the punches and do what feels right at the time. I’m sure I have made mistakes and could have done things differently but today I was thinking about what advice I would give myself back 6 years ago. So here it goes:
It’s ok to be scared/sad/angry. I think 6 years ago I felt like I had to feel grateful for just being alive and that any ‘negative’ feelings were me letting myself and others down. This is rubbish. All emotions are necessary and none should be shunned. You body and your life will be changing a lot and you need to process all these changes. Allow yourself the time to feel what you are feeling.
Speak up – talk to the people closest to you about what is going on physically and mentally. Tell them how you feel and what you need.
There is no right way to ‘cope’ – What works for one person won’t work for the next. Listen to your body, listen to your heart.
Don’t do too much too soon. I know how hard it is to rest up, but you have been through a HUGE surgery! You need to give your body so much time to heal. I have always done too much too soon and I have lived to regret it.
You are a warrior. You have come through a tough surgery and your body looks and feels very different, you have a hard path in front of you, but you are a warrior and you can do this!
Think positively. I know, I know, you just rolled your eyes!! But really, it is easy to slip into negative thinking. There will be positives in your life, no matter how small, and trying to find those silver linings in your day can help so much.
If you could go back in time and give yourself advice back when you were diagnosed or to a point of your illness where it changed, what would it be? If you have an ileostomy, what advice would you have wanted to hear?
https://www.sobadass.me/wp-content/uploads/2019/06/628ACF06-A487-4527-BD84-9F18BCC19CC5.jpeg960720samhttp://www.sobadass.me/wp-content/uploads/2015/09/sobadasslogo.pngsam2019-09-04 11:40:132019-09-04 11:40:18It's my 6 year no coloniversary! Happy birthday ileostomy!
We decided on an Egyptian theme around the scarab beetle. The Scarab is also known as the Dung beetle so it seemed fitting but they also symbolized the restoration of life and we thought that was a nice touch after so much illness and surgeries for me.
Julia was great and gave me plenty of rest breaks and kept asking if I was ok, she put me completely at ease which wasn’t easy being half naked in a room full of people whilst having someone paint your boobs!
I waited till it was finished to see the final artwork and I was blown away. It was an odd feeling but I felt so empowered, I felt like a queen! I got quite emotional to see my body that I am so used to seeing scarred, sore and broken to be displayed as this beautiful, living, moving, celebration of who I am!
It was such a positive experience and I can’t thank Julia, Kat, Jen and Paulette enough for giving me such a wonderful feeling of power and celebration.
I have had 8 surgeries related to IBD over the past six years and something that no one told me about was hair loss. Hair loss after surgery is known as Telogen Effluvium and today’s post is all about the T.E. I wrote a little about this in 2016, you can see that post here.
Hair loss after surgery
Usually around 3 months after surgery, I start to find my hair falling out. Firstly, it is more than usual in a hair brush. Then when I wash my hair I find lots more than usual coming out. I then start to find it on my pillows, coats, desk, everywhere! It is really distressing and I was shocked to find out how common it is. And how little people are told about Telogen Effluvium. This is when the stress placed on your body after surgery has interrupted the growth cycle of your hair.
As I always say, this blog is not meant to replace any medical advice and if you suddenly begin to lose your hair unexpectedly, then always speak to a medical professional. There are many other reasons why you could be going through hair loss and it’s important to rule out anything more serious.
I have had so many different hair cuts, styles and colours, it’s a running joke that people never recognise me as I can look so different. I have naturally very thick, straight, dark hair but I enjoy changing it up.
Shaving it off
But hair loss wasn’t something I thought about. So when it first thinned out and was coming away by the handful, I was terrified. But as my hair is so thick, others said that couldn’t tell. I was lucky that it thinned all over as opposed to coming out in chunks.
Last year, I found my hair getting very thin and coming out all over the place and so I decided to shave the lot off! Probably a bit drastic for some, but I have had a shaved head a few times and loved it, so off it went!
During times of stress, the body will send its precious resources (vitamins, minerals etc) to the areas they are needed the most. This means that important nutrients are diverted away from the hair follicles and towards other parts of the body that need them more (for example, when healing after surgery). The name of the subsequent hair loss is telogen effluvium.
Telogen Effluvium Explained
There are three stages of hair growth:
The anagen phase is the ‘growth’ phase, when the hair bulb forms in the follicle and grows into an actual ‘strand’ of hair. This phase lasts anywhere from 2 to 8 years.
The catagen stage is the ‘transition’ stage. In this time, the hair stops growing and moves up in the hair follicle. This stage lasts for about 10 days.
The telogen stage is the ‘resting’ phase, and this is where the hair stays until it’s shed. This stage lasts for around 3 months.
Whenthe body undergoes the physical stress of surgery, it enters the ‘telogen’ stage too soon, and is shed at the end of the stage, 3 months later.
What causes telogen effluvium?
What causes telogen effluvium
Increased hair shedding in telogen effluvium occurs due to a disturbance of the normal hair cycle.
Common triggers of telogen effluvium include childbirth, severe trauma or illness, a stressful or major life event (such as losing a loved one), marked weight loss and extreme dieting, a severe skin problem affecting the scalp, a new medication or withdrawal of a hormone treatment. No cause is found in around a third of people diagnosed with telogen effluvium.
Will the Hair Loss Stop?
Telogen effluvium usually resolves completely without any intervention as the normal length of telogen is approximately 100 days (3 to 6 months) after which period the hair starts growing again (anagen phase). However, depending on the length of the hair, it may take many months for the overall hair volume to gradually return to normal. Telogen effluvium can return, especially if the underlying cause is not treated or recurs, and would be called chronic telogen effluvium if lasting more than 6 months.
It’s good to know that it’s extremely rare for hair loss after surgery to result in baldness. There is normally no treatment for telogen effluvium as the hair will start growing back once the trigger is removed. Medication does not speed up this process.
Where I’m at now
So as my hair started to grow back last year, I then had another surgery. Though I didn’t notice much hair loss after this one, I felt like my hair was getting back to some health. Weirdly, it has grown back much curlier than before though!! But this past week as I am now 3 months post op again, I am noticing more and more hair falling out in the shower. So I think it is all starting over again.
I know that for some, hair loss can be absolutely devastating. Just another kick in the teeth after a long journey of illness. For many women, hair feels like a big part of their personality and femininity.
Despite having shaved my head several times, the hair loss does really bother me. It is the lack of control of it all. It is scary to wash your hair and pull your hand away and see a big handful of hair there. As my hair is thick, others say they don’t notice and so it can feel a little like I am being dramatic when I say I feel upset by it. But whether anyone else sees it or not, it still is very real to me.
Have you been through hair loss, either through Telogen Effluvium or for another reason? How did you feel? What did you do to manage the situation? I’d love to hear your experience.
https://www.sobadass.me/wp-content/uploads/2019/07/can-ef.png15761880samhttp://www.sobadass.me/wp-content/uploads/2015/09/sobadasslogo.pngsam2019-08-01 05:31:122019-08-01 11:57:36Telogen Effluvium - Hair loss after surgery
I talked a bit about my Glastomadrama at Glastonbury. It was pretty stressful even though it did all end well. But I thought I would just share a few photos as we had a really lovely weekend.
I was unsure as to whether we would make it at all as it was only 7/8 weeks after my surgery. But as Timm and my son were working there, it would have been pretty lonely at home. I am so glad I made it, even if I did have to rest a lot whilst we were there.
We had just the loveliest weekend. It’s been a really stressful time and to get some one on one time with Timm was pure joy. Charlie came with us (Eli is in Australia and Thom didn’t want to come so stayed with his bff) but he is nearly 19 so didn’t want to spend the whole time with us. He mainly just popped back for food, drinks or cash! So it was brilliant to get some time with Timm that was about nothing but fun.
If you haven’t been to Glastonbury, it’s like another world. A whole city of over 200,000 people, it is absolutely huge! My first Glasto was in 2000 when I was 6 months pregnant and this was my fifth time there. If you have an impairment or disability, then get in touch with the access team as soon as you have your tickets. You can talk through your needs and ensure you have things put in place to support you. Whether that is PA tickets, accessible camping, accessible toilets, disabled platform access or more, don’t assume that you won’t be able to enjoy a festival, have a look into what they can do to make it accessible to you.
For me, it was all about access to the toilets so I knew I could get there at a moments notice and have the space and facilities to change my bag if needed. I didn’t use the accessible toilets unless it was necessary or an emergency. When you are facing a stinky, overflowing festival toilet, having a she wee and an ileostomy was a god send!! Stand up wees and poos for the win!!!
I’ve always taken the kids to festivals since they were babies but it is so different with an adult child! I have to say it was lovely to not have to worry too much about him. It was also great to have time to see bands we like together. He is an absolute doll that biggest bambino of mine!
It was a HOT one! Temperatures were well into the 30s which made my ileostomy bag a bit of a nightmare. It was hot and sweaty and trying to keep hydrated was tough. I took some rehydration sachets with me (I always keep some in my kit bag, theyre my number one recommendation!) They were so useful in staying hydrated and well.
Your festival, your way
The main thing for me is to not fall into the FOMO trap and to listen to your body. As I was recovering from surgery and also just living with the aches, pains and fatigue of chronic illness, I know I need to rest. It is easy to feel that you have to do festivals a certain way, that it’s about going wild and being out all night. Or feeling you have to see every single band there.
The reality is that you do your festival your way. Sure, make a list of the bands you’d like to see, but also know that you probably wont see them all. And the things you don’t expect to see that you fall upon will be the best things ever.
Listen to your body and do what you need to do. For me, that meant missing Stormzy as the crowds were too big and I got quite anxious at the thought of being knocked in my stomach. But instead we went and sat in the stone circle and had a drink and watched the whole beautiful festival below us.
It meant going to bed at 9pm on the Saturday night because I was exhausted and in pain. But it was lovely, I had a cup of tea and read my book whilst listening to the Killers playing in the background. My Glasto might not be everyone’s cup of tea, but it was right for me and that’s what is important.
The whole weekend was a joy and though at times it was tiring, I was so proud of myself for making it there.