Testing testing 1 2 3 … Yeah I wouldn’t know where to start but I may as well start jotting down some of my experiences with chronic illness.Sorry if I seem slightly illiterate.I’m mainly doing this not just to help me, but possibly to help others. And to remind myself how far I’ve come in dealing with stuff along the way & my experiences. At the point of writing this I am about to turn 32, (but to look at me you’d think I was a 13year old girl. No seriously)I’ve had chronic illnesses pretty much since I was 14. Diagnosed with Diabetes Type 2 Severe Insulin Resistence. And complications from thereon. 2 years later also diagnosed with Ceoliac Disease (basically I should have been on a gluten and wheat free diet from that time) For the past two 3-4 years I’d been suffering from a condition called Gastroparesis. It’s basically a disease of the muscles of the stomach or the nerves controlling the muscles that causes the muscles to stop working. Gastroparesis results in inadequate grinding of food by the stomach, and poor emptying of food from the stomach into the intestine. (Kinda crazy I know). I was finally diagnosed November 2016 (year and a half now) after suffering all that time.I didn’t really understand. Furthermore I wasn’t told what these conditions could lead to. I didn’t know anyone who had it. The older I got, the more and more people were diagnosed with the same condition. No one my age though. Which made me feel isolated and lonely at times. Made me feel slightly resentful to the conditions as I felt like I was a young person who had old people illnesses, which was unheard of. A young girl having type2 diabetes wasn’t common and I’d see people’s shock and confusion. At that age I was very rebellious when it came to my health. I’d eat anything and everything I should be limiting. There’s nothing more than wanting to feel normal. Not be in hospital like my friends and peers and visiting clinics all the time. Being in and out of hospital for years to come, from days at a time to weeks and up to 2 months. Over the years I had to deal with different issues, stages, scares and realisations. And I still do. Every minute of the day. I have lost myself so many times in the process, questioning life (the meaning of it), my purpose in life, questioning my thought process (that’s just a few of many things) My faith and beliefs help me in times of distress luckily. So hopefully in this blog (I’m not sure if its even a blog, I’m just blabbering, but for arguments sake, I’ll call it a blog for now) I can explain my current life. Mainly because I’m not an open book as such. Besides it’s slightly easier to write thoughts down than explain things verbally. And to be honest looking back up there, I don’t even know how I managed to type this much. It’s quite hard as my minds been scattered the last few years but I’ve been meaning to share what I go through so people can understand a little better as well as helping others and maybe even learn from others in the process. Addressing the world of a young person dealing with chronic pain, covering topics, conditions and lifestyles associated. I’ll try to explain how I deal with different and current complications and have dealt with past complications, how it has affected me in other aspects in my life (which will be hard as I like to remain quite private usually, but in the case of helping others, I don’t mind) my worries, my frustrations, my diet, my mood swings. Mainly mood swings as I go through every emotion known to man all day. And the occasional banter.If you want me to cover any topics or hear my experiences on a topic let me know. ( I dont really know how, Im just figuring this out! Bare with me. So on that note… I bid you farewell…. welcome to my humble abode. And feel free to ask me any questions. Peace! (as you can see once I start I don’t know how to stop – awkward much?)
So not this weekend we’re in but the one before, I decided to go away for a short visit to Birmingham, in good ol’ England. And boy am I glad I did. Honestly it’s just so hard to make arrangements to leave my house at any given time. I just have to really fight my worries and insecurities at every given opportunity when it comes to leaving my house let alone have weekends away. Because I’m embarrassed about about all sorts due to my health I’m really hesitant about going anywhere much. Now I’m a bit more in tune with my body I can sort of control myself. I actually decided to avoid consuming certain foods sometimes a day before I have made plans. I had been reading up in fodmap diets and thought maybe this would be ideal to test out. There’s a whole list of foods that I should be eliminating on that diet and have successfully done a lot so far. Some foods however I don’t eat or like anyway so that was easy. The hardest had to have been garlic, ginger, beans some veggies and a whole lot more. I hadn’t gone to a professional which is why I don’t recommend to try please ask your dr. But for me and my body I knew how my mind works with taking orders and advice. Although I will be telling my dr what I’ve tried. When I did avoid some of these foods I did notice a difference but it’s hard because foods don’t taste the same. Especially seeing as I’m avoiding dairy, gluten and wheat too. It really is a lot for my head to get round but it does help. And I realised small amounts of food have an affect on the flatulence bloating and pains I endure. It is hard to eat small amounts when you’re feeling hungry but I do my best. Especially as I’m told I have a largened stomach apparently. ( It sounded really weird to me but that kind of explains my large appetite) So large amounts of food are hard to avoid but must me done . Anyways where was I? Yes, I have to think about a lot of things when I want to leave so I decided to barely eat. So the day I left i had a slice of toast for breakfast and hours later I had a small portion of salmon and veg on my way in the car journey. To my surprise I had a fantastic ride there. No stomach pains or troubles and wasn’t exceptionally tired but managed to sleep quite well when I got to my hotel room. I managed to eat a gluten free coconut macaroon which was so nice to indulge in. I woke up got ready and made my way to breakfast. Which I was worried about as I thought they would be a trigger and thankfully they weren’t really. I had scrambled eggs and a teaspoon of baked beans. I usually avoid these foods but there was nothing else available for me in the continental breakfast. I even had a light black coffee which I haven’t had for years, just to give me a boost of energy. I also had these gluten free warburton thins my cousin got me which I had with my breakfast which were extra yum with my eggs. I didn’t even eat for the rest of the day. And had no stomach upset either. Later on that night at about 5am I did have a portion of fat chips which were so nice I ate almost all of it. Which was a big mistake! I woke up a few hours later bloated but I had to get ready and pack before I went down for breakfast as quick as I could as I had to check out of my room and leave too. I eventually went downstairs and thought to have just scrambled eggs and a teaspoon of beans just like I did yesterday. Also with a light black coffee. Hoping that I’d be ok. I eventually went back upstairs, got my luggage and checked out. By this time I could feel my stomach acting up and wished I never had breakfast, thinking I’d made my flare ups worse. ( I do a lot of regretting at times like this, telling myself I’ll never eat again in my lifetime lol) At this point I was really tired because of the late night, early morning, the drowsiness of the medication from the night before and the heat. And I thought about the long journey ahead which stressed me out even further. I had a lot on my plate. But we got on with our journey. I never told me cousin who was driving back because I generally didn’t want to worry her. Luckily if I needed to stop she would’ve done that as she needed breaks too as it was a long drive back. We stopped a few times and rested. I got a chance to use the toilets and have a breather. Thankfully. In the end i just went to sleep. I must’ve been that tired. I got home and couldn’t be more relieved to put my legs up. (My legs swell up all the time for different reasons unknown) All in all my journey was pleasant. I loved seeing family and friends. The excitement and nervousness of it all was probably the reason my stomach was acting up. It gets like that sometimes. It’s all part of the process in my gastroparesis journey. But yeah that was my experience leaving the city for the first time in a few years. It really wasn’t as bad as I thought it could be. I was having major anxiety all the time until I left and wasn’t so bad once we started making the journey. Even though I had a flare up when I was returning I did think maybe I could do this again soon. And that’s what I want to feel every time. Just take chances. Maybe not let my worries overtake my mindset and stop me from doing things in life. I’ve been subjected to isolating myself due to this condition and it’s been a really lonely process. But everyday’s a struggle to fight myself to do new things as routine and fear took over my life. And I’d only go certain places due to familiarity. It’s a constant battle but I hope I can plan more journeys and experiences with both friends and family.I’m excited for the future at this current time. (Even if today I’m not feeling so great) I’m proud of myself for even having positive thoughts through a rough time. (Gives herself a pat on the back) Remaining hopeful is a struggle but it’s a must. Be patient with yourself. You’ll be ok. ❤️Oh and I just realised I didn’t say why I went to Birmingham! It was for a family wedding. I’ll attach a picture of my outfit which is a lovely little sequin dress that I love and reused from a previous wedding. Fitted the occasion perfectly! Don’t be afraid to ask any questions about anything. I’d be more than happy to help.
Honestly I’ve been trying to avoid dairy for quite a while now and it was all going so well until tonight! I went to the cinemas tonight with my family and I stupidly ate nachos and dipped then into warm cheese dip. I got lost in the moment. I honestly forgot my situation and completely went into savage mode. It was literally so hard to stop eating when I started. I don’t know what came over me. But when I did finish I did realise what I’d done and knew I’d feel the consequences soon. So I was paranoid during my whole movie. Luckily no mishaps I went home. So here I am sitting at 4.40 in the morning sipping a peppermint tea and taking all meds possible that’ll hopefully make this easier. But I’ll be here for a while. I’m used to it. Ive been going through it for years. ( I started feeling strange from 1.30 😫.I’ve got the back massage on as I’m bloated to the maximum capacity. It’s so uncomfortable I can barely breathe. It’s literally so painful. I feel like I’ve been pumped with air and it has no way or escaping. And when it does escape slightly ( I’m not trying to be vulgar) i would still be feeling like crap! And I’m hoping it goes soon. This is painful to say the least! Since I’ve had symptoms of gastroparesis for years now I feel dairy has had to be reduced greatly in my life. Not only do I have to eliminate gluten and wheat I now try to avoid dairy. Which I am successful mostly. And I’m actually quite proud of myself but my biggest weakness is cheese! Oh my goodness gracious! I feel like I’m either lactose or dairy intolerant but it has been so much worse since the gastroparesis started. Since my delayed stomach emptying got worse my intolerance to certain foods got worse, for example dairy such as cheese (my fav) yoghurt, milk, cream. And there are so many foods that contain dairy. I was really sad for a while but got by. And it was also a source of calories for me so I lost a lot of weight. Honestly I was anticipating the night ahead after I consumed the cheesy nachos. For a second I thought I didn’t react but as as I headed to my bed I saw my stomach bloated. And I was like I knew I was in for a long, seriously uncomfortable and painful night. So here I am contemplating going out because of the cheesy nachos temptation. And I really don’t want to avoid going out. I go through phases of not wanting to leave my house because I feel trapped as it is. And it’s been happening for years. My complications, symptoms and situations do make it difficult and embarrassing for me to leave and it’s really lonely. I’m trying to get into a headspace of getting out more and I don’t want this to put me back there. So hopefully I get out of this state of mind and more confident to leave. I miss being around my loved ones and just being there for them. I’ve rambled on enough I think I’m going to go out some home online remedies or even meds. I have no idea what’ll work quick. Pray for me! Xx
One of these buns are all the proportions I can take lately. (I ate one slice already)
It’s quite small and so I just halved it to make it look and seem like it’s bigger because I do feel hungry but my stomach can’t handle it.
I do sometimes forget but I have to drill into myself ‘you’ll feel the consequences later, don’t do it to yourself’
My mind and body are always fighting each other. Lol I’m so used to it. I have to laugh it off.
I’ve had to swap my lovely Meridian peanut butter for olive oil lately because I’ve been having stomach pains (more than I do now).
And I just lather on some sugar free jam from Tesco’s. (For anyone who’s big on jam and wants to swap for less sugary ones it’s a decent swap that’s not bad on your pocket either, very inexpensive)
The buns are gluten free – if you don’t already know by now I’m coeliac. I got them from the gluten free section in Tesco and it’s their own brand. I don’t usually like their own bread brand but these buns are not half bad, they’re quite good sliced in half and toasted.
This whole eating small portions is driving me up the wall but after I do eat small I can feel the difference. I don’t feel the pain as much, which means I don’t need to take my painkillers so often. I can have a few hours without feeling like I’m on cloud nine. Lol.
I used to be able to ride out the pain and have a high tolerance for it but it’s been a bit persistent and constant lately, making it hard to leave my house and partake in a lot of things and be sociable.
It’s mentally and emotionally draining at times and I’m QUITE the sensitive suzie. (Who’s suzie? Am I just making this up?) Lol
No but seriously gastroparesis is debilitating at times and the toll it can have on you is insane to say the least. My symptoms and complications do make me want to rip out my insides sometimes it’s actually ridiculous pain. But this is my life and although it affects every part of my life all day every day I do have my odd random days where I can bare the pain and function. And there are days where I’m still in pain but I want to leave my house and take my mind off. Although it takes myself quite a lot of convincing. Let alone someone else trying to get me to go somewhere.
But regardless · الْحَمْدُ لِلَّهِ عَلَى كُلِّ حَالٍ Alhamdulillah ‘alaa kuli haal means: All praise and thanks are only for Allah in all circumstances.
My faith means everything so I try to implant as much I can. It can be hard but noones perfect so I’m trying to be easy on myself.
On that note thank you all for reading. ❤️
Don’t be afraid to ask any questions.
And it reminded me of when I was first diagnosed. I was scared as I was out and had a appointment.I had a early morning and was excited because the sun was out. (UK people you know how we get) I thought I want to make the most of this energy I have too. I knew halfway through the day I’d be drained. It’s my routine. But go forth nonetheless.Me and my sister went to Bill’s and enjoyed some breakfast. I was really bloated but continued to eat anyway. The food was too good to give up. I had a few tummy rumbles but thought nothing of . Then we left, and I had a bit of time to waste before my appointment my sister wanted to get her car washed. All of a sudden I needed a toilet. Luckily the car wash had one and although it was GRIM! But desperate times call for desperate measures. There was no way I could go search for another bathroom. So I went. Felt relief physically for a while, finished up and we left after the car wash.We got to my appointment slightly early and my sister waited in the car until I was done. I went in gave my name at reception and again urgently. So I went. I came out and waited as I filled out a questionnaire. After that I was called in.The lady walked me into the room and asked me what I needed done to my wound. (I forgot to mention I was at the podiatrist’s.) My old wound on my foot has to be regularly inspected just in case it gets infected, which happens once in a while. So she decided, it was probably best I see the senior podiatrist (who was behind with her appointments) as she was a assistant of some sort. Which I thought was a good idea and she left me in the room. After 30 seconds my belly started making noises and contracting. And low and behold I needed the toilet.I quickly got up and walked out of the room in the search of the assistant and told her I was going to the toilet. So I scurried off. Mind you I can’t run as I broke my leg around a year and a half ago and it affected my mobility. And I thought any sudden movements would be a problem. It seemed like forever as the toilet was down the hall. And as all gastroparesis sufferers know 10 seconds feels like a long time, let alone 4. But however when I reached the toilet I almost lost composure. But I held it together for one more second. Lol. I almost forgot to lock the door.I was in there for so long I thought I’d missed my appointment. I was gone for almost 20 minutes. And finally had the courage to leave the toilet. I walked back down feeling a bit traumatised by the situation as I couldn’t ring my sister and I felt so alone. I was on the verge of tears and almost broke down in the toilet. I think that’s why I took so long to gather my thoughts and once I thought I would be okay I left back to room.I’d never had to deal with a flare up outside the comfort of my home of my home since I was diagnosed. Hence why I don’t really like leaving my house much anymore. Not very social anymore because of it. And this was horrifying for me to deal with. I just wanted to pass out walking back. I felt so lethargic, completely drained. But I made it through my appointment and staggered outside not letting up what was wrong the entire time until I got to the car. The relief was indescribable. If there was no toilets around it would’ve been chaotic mentally, physically and emotionally. You can only imagine. It would’ve been highly embarrassing and I do feel very insecure about it from time to time. And again because I only deal with this at home since I’d been diagnosed no one knows what I really have to deal with.I did come straight after and had a little rest. But I did also want to enjoy the sun and so I did. Normally I wouldn’t dare. Is be so knackered to say the least but I took my sunglasses (so I didn’t look too much like a extra from a zombie movie) and went to chill with some friends and family. Which I was glad I did, and when I got home, I think my body went through too much so I went straight to sleep. And I didn’t wake up until next day late morning. 10 hours. I was interrupted once but I went straight back into bed. (I normally don’t sleep more than 5 hours at a time, very unpredictable if that) Which felt so good!So from now on I pray I don’t have to deal with any many awkward situations outside of my home. It’s stressful enough inside.
Yesterday was painful!
I managed to eat but I had Omeporazole and some lactulose which I didn’t see any difference in pain until I decided I should just visit the toilet by chance. I didn’t think I’d have a peaceful sleep. I was prepared til this point considering the agony I was going through. Luckily that visit to the toilet was a relief to say the least. Majority of my pains had disappeared.
I always have pain when I’m digesting food and always feel relief when I go toilet. It’s a viscous cycle. It’s got to a debilitating stage now.
I woke up this morning and needed to go toilet urgently. I think the lactulose was doing it’s job.
Lactulose is a non-absorbable sugar used in the treatment of constipation. It is used by mouth for constipation and either by mouth or in the rectum. (WEBMD)
Anyways, I ate toast for breakfast as I was so kindly that carbs was my friend so thought there’s no harm in trying to be pain free even if it is for a short while. And to be honest it didn’t feel any major stomach upset. I put the Meridian crunchy peanut butter on top (I usually like smooth but needs must). And I had a cup of tea with dash of alpro soya almond milk. What can I say I was in a nuttty mood 😌
So I felt fairly good. ’Good’ for me is a bit different to what I used to normally feel. so as long as I wasn’t getting shooting pains while I was digesting I was ‘good’. I still had pain but it wasnt excruciating and irritating. After watching a few programs and YouTube videos I had a 2hr nap. Then I was up. Not by choice 🤨
I got up and ate the meal pictured above.
I tried to not eat veg as I’d been told it would be a irritation because it was fibre but I couldnt do it. I have no self control guys. *side eye*
Mum made the stew (suqaar) in Somali, which was sooo good! Not sure what meat she used, it was either lamb or beef cubes into small pieces with diced potatoes and carrots. And then she seasoned it with salt tomatoes, garlic, garlic , coriander (that’s what I could taste anyways) Very potent stuff. Amongst other things (knowing my mum) I had a small avocado and few bits of broccoli and cauliflower.
I had this with another cup of tea. ( I have to have at least two cups a day before 4pm otherwise I’ll doze off.
Before this meal I did have my dose of lactulose, hoping it would help the process of digesting quicker. And to be honest I’m bloated. And feel very hot. I think I may have trapped wind because I feel tightness around my stomach. I was like this yesterday too. Very bleugghhh.
But considering all that I hope next few days go easy for me as I take out fibre in the upcoming next few days/week! It’s gonna be so hard!
But pray for me!
It really is playing with me.
I’m having really delayed emptying lately.
Sorry I’m not sure I explained what it actually is.
Basically the nerve in my stomach is damaged and won’t move or digest the food I eat properly. That’s the simplest way of putting it. It’s paralysed as some would put it.
It is VERY painful to be honest and I’m pretty much house bound because of it and it’s complications.
If I know I’m leaving or want to leave the house I’ll have to drugged up beyond measure or change my diet for roughly 24 hours. The medication has side effects having to deal with has its own problems too.
It’s hard to be spontaneous. It’s not always predictable. So much so I’m extremely conscious of my surroundings a lot. It’s caused me to have extreme anxiety and don’t feel too good during social surroundings. And it’s changed me a lot as a person too.
The stage of food passing through is getting harder at the moment. I’ve had to eat twice a day as of late. I can’t physically take the pain and feeling anxious.
I try eat fibre a lot to help aid the digestion. And I try avoid carbs as that is very hard to process. I even have to blend the foods sometimes as I feel it makes it easier to pass through. Honestly, baby food style.
At the moment I’m maintaining weight which is hard as I’m quite slim and I eat quite healthily.
Todays meal was not blended (thank goodness) i ate a plate of broccoli, carrots, avocado, hummus and half a can of tuna. I really needed the hummus to make it flavourful as I couldn’t be bothered to be in the kitchen too long and create something more adventurous. Although hummus doesn’t react well with my stomach I needed it. I’ll deal with the consequences later.
As well as gastroparesis I have coeliac disease, nerve damage, diabetes, have mobility issues, hypertension and I am partially blind. And that’s what I can remember.. It is very tiring and frustrating situation to say the least with a million emotions that change every moment of day.
But I have to say Alhamdulilaa (praise be to God).
Brunch Idea –
Gluten free toast topped with mashed avocado and hummus and spinach.
Today’s brunch had to be very light as I didn’t really want to eat much I woke up in pain.
However consuming hummus also had its problems but I always willing to suffer slightly. Weird right? Mental preparation at its finest!
It’s just so hard being intolerant to a lot of things, but now I’ve established how to deal with it and when’s appropriate for me to have certain foods I will attempt to eat it. Like days when I’m at home is obviously better than being out and about.
However I’m not quite sure what it is in the hummus I’m affected by I buy the Tesco organic brand which I LOVE! Which is sugar free, dairy and gluten free too! Yaaay! (I have to avoid these because of the other conditions and intolerance’s I deal with)
Anyways here’s a list of ingredients
Organic Chickpeas (39%), Water**, Organic Sunflower Oil, Organic Tahini Sesame Seed Paste, Organic Concentrated Lemon Juice (3.5%), Organic Garlic, Sea Salt**
Looking at that I’m seriously confused as to what may me bothering me but I do have everything but the Tahini Sesame Paste and Chickpeas regularly. And the other stuff doesn’t bother me much in a day to day basis so maybe if I test for the ones that I don’t eat regularly that’ll give me a rough idea.
I am able to tolerate the avocado and spinach amazingly. Which I’m very happy about but I needed hummus for its flavour. I’m slightly addicted so much I used to have it daily. No, really.
But yeah enough for today I hope my recipe tantalises your tastebuds. And hope it’s something coeliac or gastroparesis sufferers can tolerate!
Dislclaimer what works for me may not work for me! However enjoy!
Coeliac disease is a lifelong autoimmune disease caused by a reaction to gluten. 1 in 100 people have the condition. Symptoms include bloating, diarrhoea, nausea, wind, constipation, tiredness, sudden or unexpected weight loss (but not in all cases), hair loss and anaemia.
That description was just a little heads up on my current situation. I’ve suffered with this condition for around 16 years and I’ve only been taking it serious for about 6 years now. I was very rebellious with my health. Anyways today I won’t dive into all the history of it maybe next time. I hated the idea of having to not eat pasta, bread and pizza. And that was just the simple stuff! Imagine there’s pasta sauces and soups (people use it as thickeners). Brownies, cakes, cornflakes. I was not having it that age!
But the last 6 years since I’ve been gluten and wheat free (at this point I was sick and tired of having stomach upsets and feeling really unwell)
I’ve been seeing a lot of restaurants catering to coeliac sufferers and people who are just on a gluten & wheat free diet.
Today (16th May 2018) I managed to go to Bill’s for the second time. Although I enjoyed it the first time I didn’t want to be excited about their menu incase it wasn’t the same this time round.
The restaurant itself is very antique looking and looks vintage but had a British chic vibe. I love it!
Just to double check I got the same meal from last time. I wanted to see if I enjoyed it just as much as the last time.
I ordered the gluten free Bills vegetarian breakfast. It had poached free range eggs, pesto roasted tomatoes, mushrooms, tomato hummus, guacamole, sweet chilli sauce, basil and toast.
Although I’m a self diagnosed lactose intolerant (I don’t need a doctor to tell me I am I know what I feel) not really sure if this is meal is lactose free. Please do double check onsite and ring.
It’s safe to say I was satisfied. I mean I would have been very upset if I wasn’t. The flavours and textures all work so well together. The gluten and wheat free bread worked extremely well as it wasn’t tasting like cardboard and to me was one of the best gluten free roasts I’d tasted. Not sure if they make their own but either was I was impressed to say the least. (Picture below doesn’t do it justice)
There are plenty of other choices on their specific gluten free menu for breakfast lunch and dinner so I’m yet to try and indulge. (See menus attached below)
To be honest I think I’ll try majorly of the different foods available. It has my ideal food cravings and it doesn’t seem too heavy but comforting.
My friend who’s not on a gluten free diet was very impressed too. She had a omelette with kale, edamame beans, lemon feta, spring onions,
smoky tomatoes, olives and Pico de Gallo salad. To be honest that sounds amazing too and I will be indulging in this next time.
And honestly I can’t wait. I will be a regular customer even if I only get that one epic breakfast. I can enjoy morning breakfasts a lot more with my loved ones. So all loved ones we will be visiting here. A LOT!!!