Happy Friday everyone! We have made it through another week! Who has kids that are breaking up for the Easter holiday today? The boys are spending the first week with their Dad and the second with me, I can’t wait! Today as part of my Spring Cleaning Week I am sharing ten hacks to make cleaning easier for those with chronic illnesses. I hope you find my tips useful and if you have any more, please add them in the comments below so everyone reading this can see them as well.
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AD | Gifted
Good morning and happy hump day! I was recently contacted by Sarah on Twitter (@BraceYourselfSS) who asked if I would be interested in reviewing her new book. She describes it as a work of fiction, based on her own experiences, and the main character lives with chronic illnesses including Postural Orthostatic Tachycardia Syndrome (POTS) and Ehlers Danlos Syndrome (EDS). I jumped at the opportunity to read a book with a chronically ill lead, and being in hospital has given me lots of time to catch up with my TBR list.
Brace Yourself is a light-hearted look at the atypical life of ‘nice’ Lizzy, who doesn’t understand why her body and her men always let her down. Looking to regain control of her life in this rom-com with a twist, will Lizzy’s bright-side attitude finally attract the perfect partner?
This isn’t a self-help book, but if you’ve lived with chronic illness you’ll identify with Lizzy’s struggles to stay upright in a world that knocks her down. We join Lizzy on her humorous journey through a series of painful disasters.
But with bad choices, bad men and bad Doctors behind her, Lizzy finally braces herself for a comfortable life.
Brace Yourself observes what it’s really like to live with Chronic Illness.
Lizzy spent much of her life negotiating undiagnosed Postural Orthostatic Tachycardia Syndrome (POTs), Ehlers Danlos Syndrome, Fibromyalgia and associated conditions. Rated 5 stars by fellow spoonies and zebras, with plenty of ‘me too’ moments, this unputdownable novel combines rom-com with Lizzy’s health struggles until she finally gets her diagnosis.
Described by a reader as “witty, fun and spot on!”
“Reading this is like hanging out with your best friend” – your single, disastrously dating best friend, who is a good laugh, and who also happens to have POTs and EDS.
I have always fancied the idea of writing a book with a disabled or chronically ill character, so was really excited to read this and see how it worked. I loved the cover of the book, and the subtle nods to things like the zebra (the EDS spirit animal) which people in the chronic illness community will love.
Any fans of Bridget Jones type rom coms, the ‘chick lit’ genre and anyone with a chronic illness is going to love this one! The story flows really well, is definitely very witty and the lead character is so likable, she becomes like a friend. I loved the fact that there was a story alongside the chronic illness, which shows people that our lives don’t solely revolve around our illnesses. For Lizzy in this book, that centers around the world of dating post divorce. Her chronic illness throws some often hilarious spanners into the works, as well as the usual dating nightmares that can exist.
Being chronically ill I could identify with so much of what Lizzy was going through in the book. It was so good reading something like that as there are very few books I have come across that I can relate to in this way. You will find yourself laughing out loud thinking that happened to me too, as well as commiserating, thinking I know ow she feels etc.
I believe this will be the first in a series of books about Lizzy and I really hope that is true. She is a fantastic character and I really enjoyed this one so would love to read more.
I hope you enjoyed reading my review and really do think everyone should give it a read, especially if you have chronic illnesses yourself or are a fan of the genres I mentioned above. My mum has now taken my copy to read as she sat chuckling reading the first few pages when she came to visit me the other day! Have you ever come across a book with a chronically ill character in it? I haven’t but would be interested in hearing of any more – pop them in the comments below and I will check them out.
I was gifted this book in return for my honest review. All opinions contained here are my own
Good morning and happy new week. Today is officially known as Blue Monday – apparently the most depressing day of the year.
Many people don’t realise that along with being diagnosed with a chronic illness, people are usually also struggling with their mental health. Having a condition which can mean you struggle to complete everyday tasks and have a ‘normal’ life can be very demoralising. Chronic illness may also affect you socially, leaving you isolated and lonely while feeling unwell at home or in the hospital.
I saw this in a post over on Happy Mentality and thought it would be a good one to do for today. Supporting people with chronic illnesses with their mental health is something I am passionate about. It can so often be overlooked by the NHS, due to low funding and a focus on fixing physical problems and symptoms. My inbox is always open to those needing support or help, so please feel free to message me anytime.
I have anxiety and depression. Both started around three and a half years ago when I was having a rough time with my health, as well as in my marriage.
I use both and I think that works best, particularly with anxiety. I take Citalopram daily which is an antidepressant and also good for anxiety. I also have CBT sessions.
What is CBT? Cognitive behavioural therapy is a form of talking therapy that can help you manage your problems by changing the way you think and behave. It’s most commonly used to treat anxiety and depression
I started on Citalopram taking 20mg a day, which was then increased to 30mg. This seems to suit me with minimal side effects and I feel my anxiety and depression is well controlled.
I would say that I have been suffering with anxiety for a little longer but I realised I was depressed in September 2015.
Yes. I am very open about it and many of them read my blog so see things like this! My partner Ste, Mum, Dad and brothers have always been really supportive.
I cannot currently work due to my physical health. I wouldn’t say that depression and anxiety affects my daily life, some days and weeks I can be perfectly fine. It sort of comes in waves. Sometimes when certain things happen or my health is particularly bad, there is an explanation, but sometimes life is fine and the feelings I have are pretty inexpiable. This has been a lot beater since I started taking medication and attending CBT though,.
Reading, sleeping, being with my kids and dogs. A relaxing bath and a bit of a pamper. My blog helps me by giving me a focus and other people to help and support. I enjoy writing, planning and also putting make up and getting dressed every day makes me feel more together.
I made a post about Coping With Anxiety – Grounding Techniques last year. My go to technique is the square breathing one. I find it easy to remember and simple to do, and it works! I am also getting better about speaking to people when things are happening. After the boys went to live with their Dad I was really struggling and not in a good place. Luckily, at two of my lowest points I was able to open up to Ste and a couple of close friends who helped pull me through.
It sounds cliche but my best advice is to open up to someone. Whether that is your partner, doctor, a blogger who writes about this stuff, a friend or your rheumatology nurse who is there to mainly see how your joints are doing (yes, that was my choice although I hadn’t planned it), you will be amazed at how people will want to hep. The sense of relief that came from just telling someone about how I felt was so immense.
Saying that, some people will be supportive butt not know how to help you, so pick your chosen person with care. This can often mean it is easier to speak to a medical professional or someone who is open about their own mental health problems. If you try once and don’t get the answers you need, try again. You did the hardest but once, now you are ready to receive the help you need and deserve.
The kids, Ste, our dogs and extended family. Reading will always make me smile. I also enjoy going to the cinema, watching Netflix with Ste snuggled up in bed, exploring and visiting new places, fresh air, shopping, cross stitch, learning and cooking (as well as eating ha ha).
Confusing, upsetting, strengthening, eye-opening and tiring
Hungover, hair half in still, the morning after my friends masquerade ball. Maybe I should have kept my mask on ha ha!
I hope that today is actually as positive as can be for everyone. Please feel free to use these questions and continue the tag on your blog. I am not going to tag anyone specifically but hoping some of you will carry this on!
-Happy Friday one and all, we are almost at the weekend! Hope you have all had fantastic weeks, we have been very busy but I have also been keeping well rested and looking after myself.
Today I wanted to share a post about Gastroparesis. August is Gastroparesis Awareness Month. Until I met Ste I had never heard of it before, but it is something he suffers from alongside his Crohns Disease.
Gastroparesis affects the stomach. It is a condition which causes the muscles in the stomach to slow down and not work as they should. This means they cannot break down food properly and also prevents the stomach from emptying properly. In severe cases, the stomach muscles are completely paralysed.
Gastroparesis is also known as delayed gastric emptying
Known causes of gastroparesis include poorly controlled type 1 diabetes and some types of surgery – weight loss surgery and gastrectomy (removal of part of the stomach)
Other possible causes include Parkinson’s Disease, some medication, schleroderma and amyloidosis
Your GP will want to know about your symptoms and medical history and may order some blood tests. You may be referred for further tests including
Gastroparesis cannot usually be cured but there are a range of ways that symptoms can be lessened. Unfortunately, these do not always work well and 1 in 10 people can be completely disabled through their symptoms.
Dietary changes including eating smaller, more frequent meals, ensuring you chew your food really well, drinking while eating and eating, soft foods can help. Following a low residue diet may be helpful, eliminating foods which are harder for your stomach to digest such as fruit and vegetable skins.
Medication may be given although the effectiveness of these is questionable. Antibiotics and domperidone may be prescribed, but should only be used for short periods of time. Anti-emetics can be given to help relieve nausea and sickness symptoms.
Electrical stimulation is not funded by all NHS trusts, but may be used if dietary changes and medication are not helping. This involves having a small battery powered device being surgically implanted under the skin of your stomach. Two wires from this are attached to the lower muscles of your stomach. The wires deliver electrical impulses which help stimulate the muscles of the stomach to digest and move the food along in a similar manner to a pacemaker which controls the heart.
Botulinum Toxin (botox) may be injected into the valve between the stomach and intestine in severe cases of gastroparesis. This is a fairly new treatment.
Feeding tubes may also be considered. There are many different variations of these which include NG tubes, nasojejunal tubes and jejunostomies. TPN may also be considered in severe cases, when nutrition is delivered through IV lines. In a couple of weeks I am doing a series on the blog all about tube and TPN feeding so be sure to look out for that!
Surgery may also be considered. Some people have tubes inserted into the stomach through which gas can be released to relieve bloating. Two procedures, often considered as a last resort include a gastroenterostomy which creates a new opening between the stomach and small intestine) and a gastrojejunostomy (creating a connection between the stomach and second part of the small intestine called the jejunum) – these procedures are both designed to help food move through the stomach more easily
Unfortunately, Ste has a very severe case and has tried many of the treatments on the list, with little success. He is sick multiple times a day and struggles to keep even small amounts of food down.
“No matter how many times I am sick, it is something I never, ever get used to”
When food is unable to travel through the digestive system, it will generally build up before coming back out the way it came in. Ste is now back on TPN for nutrition.
Ste founded and helps run the Sick But Invisible campaign on social media to help raise awareness of invisible illnesses. Check out the Sick But Invisible Facebook page
Anna’s Story
Anna contacted me on Twitter after I did a shout out looking for people willing to share their Gastroparesis journey.
“Toward the end of 2012 I began to notice I couldn’t eat as much, solid foods were causing pain, and I began to lose weight without trying. I have Crohns, so the first though by me and my GI was that my Crohns was coming out of remission. Slowly over a year I got to the point that I couldn’t eat anything solid, and even shakes would fill me up quickly. I lost 23lb in that time and hit a low of 98lb. All the tests my GI ordered came back looking fine. I even had what became exploratory surgery in March 2013, I say became because it also showed no inflammation or other problems.
Once my GI ran out of tests he sent me to a research hospital. In late 2013 I had the GES done and was diagnosed with GP. I received very little help from the Dr however. She first prescribed a liquid antibiotic, it failed. I could only get in w/her every 3 months. She put me on gluten free, everything juiced or puree, sugar & carb free, and a couple other diets that didn’t help & some making me worse. She also put me on 150mg of Lyrics 3x a day, I was sleeping 18hrs a day, but wasn’t in pain.
I began to look into alternative treatments & started acupuncture and reflexology. W/in 2 months of starting the acupuncture I was no longer vomiting, I had been vomiting 10+ times a day. My nausea subsided, and I didn’t need my phenergan as much. Reflexology relieved me of the distention when I get bloated. I was to the point I could only wear cotton shorts/skirts/and dresses. Most of all I was able to start eating easy to digest solids. Crackers, bananas, flake cereals. Around this time the research hospital also had brought in a GP specialist. I requested to be transferred to him, but he just started over w/the same meds I had already tried. I asked to have the botox done, he said it wouldn’t help me. He even questioned if I had GP, because I didn’t have the typical symptoms anymore. I just couldn’t eat. He sent me to Atlanta to see a Dr to redo my GES & see if I was eligible for the G-POEM procedure. I still had moderate to severe GP & was eligible for the procedure. I decided not to have it done, too much travel, and travel expenses for a procedure that didn’t have a lot of information about long term effects…
When I got home I researched GP specialist & found one that had just started in my area. I left the research hospital, 3 years, no help, zero improvements, I was done. On my first visit my new Dr approved the botox. I found a pain management Dr that was doing spinal nerve blocks for my pain. For the first time in years I could eat turkey burgers again. When my pain blocks are working (3-6 months), and the botox is working (6-7 months) I do well. I still suffer from fatigue, I still struggle to keep muscle mass & endurance up. I walk a fine line of everything working well, or one thing not working it’s best & everything falls apart. Compared to when I was diagnosed, I feel like I am doing well, even at my worst. I still would like my life to be more predictable, both the pain block & botox when they wear off, it’s quick & I’m back to liquids & easy to digest solids. It takes about a month to get in w/my Drs, then to schedule the procedure, to getting it done”
Thankyou so much for sharing your story with us Anna and it is so nice to see you are getting some relief from the treatments available.
Trisha
Trisha is a fantastic blogger I was lucky enough to come across on Twitter. She writes about her life with Gastroparesis, reflects on her own health journey and raises awareness of this condition. Twitter username – @bundytr5
I really hope reading this post has helped bring some awareness and understanding to this dreadful condition. Ste is happy to answer any questions people will have, so pop them in the comments and he will get back to you! Otherwise, have a fantastic weekend,
