Blooming Mindfulness | Trying to live with Chronic Illness
Hi there I am Beverley, I am a Buddhist Christian trying to find a way to live with Fibromyalgia, Anaemia, Chronic Fatigue, Depression and General Anxiety Disorder. I live with my Husband Lee and our dog Gizmo and our budgies Rey and Finn. I live in England and look forward to getting to know you better. I will be updating every Sunday.
So a few weeks ago I was told I had two illnesses and you can read about them HERE, so I have just taken myself a little time to come to terms with them. On the one hand, Spondylosis was not a big shock I have been having a lot of upper spine pain and now I know what it is I am happy. I mean well, not happy happy, but now I know what it is I can look up things to help and get practical about things if that makes sense?
But with hEDS, I am finding a lot of anger and frustration because as I research and read up on this illness the more upset I am feeling. I am finding my being diagnosed fell at the right time because I found out at the beginning of EDS awareness month so there is no shortage of informative articles floating around like this one by the Mighty, or this one by Mystripeylife.com which I am extremely thankful for!
However, the more I read the more angry and frustrated I feel, and I think it is because I have so many of the symptoms and I find out decades after and I want to go shout at my old Drs “I TOLD YOU IT WAS REAL!” I didn’t walk until I was almost two and would drag my left leg when I crawled, my skin is very soft to touch and I bruise very easily, I was in so much pain as a child but when I went to the Dr they would tell me it was simply ‘growing pains’, I have always had balance issues, I had to have a lot of dental work and teeth removed as a child and the anaesthetic never worked as well as it should have…and I can go on!
Knowing I suffered so much to have nobody listen, to know that I just pushed through and forced myself to act like I was fine for so long ignoring the pain it upsets me. But what upsets me the most, is that younger me thought I was being dramatic or I was too sensitive everyone else gets by with these things! On top of that, I had family members make fun of me, and put me down because they did not believe me or understand that it was real…they believed the doctors they thought it was in my head.
Now I don’t want you thinking I blame those members of my family, because I don’t, they were simply misinformed and trusted doctors and dentists who themselves did not see the whole picture. General practitioners can often miss rare illnesses because they don’t get the time and there are so many rare illnesses there is no way for them to know them all. Logically I know this, logically I am thankful to now have answers and to have a way to move forward with greater understanding hopefully from the medical professionals I meet in future.
Yes I think it is legitimate to feel anger and frustration when you find this sort of information out, I need to be patient I need to allow myself time to feel these things. But, as I am a Christian and a Buddhist, I try to refrain from looking back too much and to be in the moment so I guess what I am saying is that from now on I will be updating my blog every Monday again! I gave myself time and I was patient, but this blog means so much to me, like my You Tube channel, it gives me a voice, it is a chance to connect with others and make friends.
So I guess I am incredibly thankful to people in the EDS community for welcoming me, answering my questions and giving me advice when I have asked. I feel so lucky my diagnosis came at the start of the EDS awareness month I am thankful I have a diagnosis that finally makes everything make sense…so yes anger and frustration is there but I am choosing to look at things with a grateful heart.
Extensive studies were done to identify the composition of the black seed, the ingredients of N. sativa seed includes fixed oil, proteins, alkaloid, saponin and essential oil.
The fixed oil(32-40 %) contains: unsaturated fatty acids which include:
stearic and myristic acid
sterol esters and sterol glucosides
The volatile oil(0.4-0.45 %) contains saturated fatty acids which includes:
nigellone that is the only component of the carbonyl fraction of the oil
α and β-pinene
4-terpineol and longifoline
Black cumin seed have two different forms of alkaloids: isoquinoline alkaloid that includes: nigellicimine, nigellicimine n-oxide and pyrazol alkaloid that includes: nigellidine and nigellicine.
The nutritional compositions of N. sativa are vitamins, carbohydrates, mineral elements, fats and proteins that include eight or nine essential amino acids.
Black cumin seeds also have saponin and alpha hederine and in trace amount has carvone, limonene, and citronellol, as well as provide relatively good amounts of different vitamins and minerals such as Fe, Ca, K, Zn, P, Cu
When you start to peel back the layers of this black seed, you find a Fibonacci sequence of types which blows the mind away in its superiority to what we think we understand.
I think its safe to say regardless of what you may believe or think, black seed oil is something we all have to research.
You may know black seeds from a variety of different names, depending on which part of the world you’re in or from.
Here are a few other ways black seed oil is referred to around the world:
Black seed oil is simply an extracted oil substance produced by the squeezing and compression of black seeds. There are countless of home appliances that will let you produce your own oil, or you can always buy some here.
The main origin currently of black seed is primarily in two places, India, and Turkey. The seeds are grown annually and are shipped all over the world. We searched all over the world to find the best and purest black seed oil. In its purest form black seed oil is very hard to come by, so make sure you do your research!
What Are Black Seeds?
The tiny, black, thick shaped cumin seed is most commonly referred to as ‘black seeds’ or ‘black cumin seeds’. They are slightly curved with a rough distinct texture that makes them unique and easy to identify.
Black seeds can be consumed in a variety of ways! From bread toppings to cold pressing the seeds for the oil.
What is Black Seed Oil Made From?
Black Seed Oil is made from the Nigella sativa plant through a process which compresses the seeds and extracts the oil.
The purest black seed oils will not use a filler oil to increase the quantity of the oil, rather they will leave it as is and keep it pure.
You can tell if your black seed oil contains a filler oil by how easy it is to absorb through internal as well as external uses.
The black seed oil should not be too oily in consistency. You will easily tell the difference when using a superior black seed oil by its easy absorption and strong effects.
The pure black seed oil holds a distinction in how dark it is, the oil should be almost black and not lighter in color.
How do you Take Black Seeds?
You can take black seed oil in a variety of ways, from orally to topically, the applications are endless. In fact not only can you use and take the oil of black seeds but you can also use and take the seeds itself.
Please make sure to know the risks and use of the black seed and how it impacts your health. Always make sure to follow your physicians suggestions as they are most qualified to treat, cure, or diagnose your issues.
Heres a quick list ofWays to take black seeds:
Consume a teaspoon of black seed oil
Mix teaspoon of black seed oil with honey
Consume black seeds plain
Boil water with black seeds, let simmer and consume
You can add black seeds to bread, food, and pastries
What is Nigella Sativa Used For?
Nigella sativa is used for its many reasons and has been studied for research purposes on many diseases and complications. “Nigella sativa” is just another name for black seed oil.
You can find a variety of name for the black seed oil as they have traveled the world over and our renowned everywhere.
Nigella sativa is in fact what makes it completely different than black cumin oil which you also might have heard of.
Black seed oil is superior to black cumin oil in the fact that black seed oil contains all of the properties of the black seed.
The confusion with black cumin oil comes from the name usage mishaps online, so make sure to know the difference!
Most of the pharmacological effects are due to quinine constituent, of which TQ is mainly abundant.
Cancer is a result of DNA mutations multiplying too quickly for your immune system to catch up. Caused mainly by inflammation, the thymoquinone and thymohydroquinone properties of black seeds have been found to be effective in combating some forms of cancer in mice.
A study conducted by Nutrition and Cancer in 1991 showed that topical application of N. sativa extracts inhibited two-stage initiation/promotion [dimethylbenz[a]anthracene (DMBA)/croton oil] skin carcinogenesis in mice.
Known mainly for its anti-inflammatory properties, black seed oil has benefits in the use of many different challenges, including topical application on skin.
No results yet have concluded that black seed oil can cure skin cancer but future studies on this issue will still need to be explored.
Black seed oil for Acne is a common search topic because everyone wonders how to deal with acne.
One of the reasons acne occurs might be caused by inflammation of the skin, which causes people to break out.
A study conducted by AJTCAM showed detection of the antibacterial effect of Nigella sativa ground seeds with water. (2)
Black seed oil might have antibacterial benefits for your acne.
Black seed oil can be topically applied to your skin.
Infections of all types are fought off by the immune system, specifically white cells.
Black seed oil helps your body benefit from head to toe.
This is a unique property that black seeds were known for throughout history, and they stood the test of time.
Infertility can have a variety of different causes and is best consulted with a doctor.
Antioxidant components in medicinal herbs such as Nigella sativa (NS) have been indicated to improve spermatogenesis and steroidogenesis.
A study published in the Journal of Herbal Medicine aimed to study the effects of Nigella sativa on male infertility.
The outcome of this study indicated that NS can positively influence sperm parameters, semen, Leydig cells, reproductive organs and sexual hormones.
The main potential mechanism is through the antioxidant properties of NS. Thymoquinone (TQ) and unsaturated fatty acids are the main antioxidant components of NS. NS and TQ derived from NS can improve male fertility parameters through promoting antioxidant defense.
Although the findings of this review suggest that NS is a good candidate for male infertility treatment, there is insufficient evidence to make recommendations for its use as an adjunct therapy in infertile men.
More clinical trials are recommended to demonstrate the efficacy of NS on male infertility.
9. Good for Your Hair
From thinning hair to dryness, there are countless of reasons which can cause hair issues, mainly by not taking care of your health.
Even if you do take care of it, ironically many of the hair products in the market actually cause more damage than said.
Another arising issue directly related to a weak immune system is flu or fever can cause serious even more damage to your immune system.
Not having a way to help your body can leave you in bed for days if not weeks.
Since the black seed is anti-inflammatory, you can use black seed oil for cases of flu and fevers for quick relief.
With immediate aid to your immune system, your body will feel the potent antioxidant and antibacterial properties of black seed oil go to work.
A suggested recipe is mixing honey and black seed oil in a cup of warm water. Doing this daily will not only get rid of your flu and fever but improve your overall well-being.
11. Boils and Carbuncles
Whether it’s a single boil (furuncle) or a cluster of boils (carbuncle), black seed oil is a great way to find out if it can work for you.
As long as the boil/s are smaller than a half inch, black seed oil might help it disappear.
Boils are caused by bacteria which the potent anti-inflammatory and anti-bacterial properties of black seeds TQ contain.
If the boil is any larger than half an inch, you must seek immediate medical attention.
12. Coughs and Asthma
With the inflammation of bronchial tubes (the body parts that allow you to breathe easily), it can cause quite a stir and inconvenience gasping for air, breathing deeply but not getting enough oxygen to your lungs.
Black seed oil targets your immune system and its antibacterial properties fight off any bacteria and virus.
It’s great for anything that’s caused by inflammation. Specifically bronchitis and asthma, two of the more prominent uses of black seeds.
It has even been recorded in history that the one of the main uses the Ancient Egyptians had for it was helping improve cardiovascular health.
Since most diarrhea is a result of a viral infection, the anti-inflammatory properties of black seed makes a perfect home remedy for it. It balances your digestion and intestines, allowing your body to become less constipated.
Many suggest mixing 1-2 teaspoons of black seed oil with yogurt for 2 days before the diarrhea is completely gone.
For a lot of people, the moment that they discover the news that they have some kind of long-term or chronic illness, it can often feel as though the whole world is crashing down around them. It can make a lot of things feel pointless and as though there’s no real purpose in moving forward at all. Of course, that’s obviously not the case. Long-term illness is far from a death sentence and many people go on to live incredibly happy and fulfilling lives after being diagnosed. However, that doesn’t mean that there aren’t adjustments to your life that need to be made. With that in mind, here are some things to think about in a life after illness.
The boring stuff
One thing that you’ll want to get out of the way as soon as possible is all of the boring legal stuff and other paperwork that you inevitably have to deal with. Whether you’re filing an insurance claim or going through a company like The Specter Partnership to get compensation if you’ve been a victim of malpractice, it can be tough to motivate yourself to deal with any of it. However, doing it as soon as possible means that you can get on with your life without having to have those things constantly hanging over your head while you’re trying to adjust.
For a lot of people, when they get back to their normal life they’re faced with one question: now what? It’s okay to feel a little lost, at least at first. After all, you’re dealing with a big change and it’s understandable that you might expect the rest of your life to reflect that. But the truth is that life goes on no matter what and it’s up to you to try and go on with it. Think about the changes that will be needed in your life but also focus on the things that are staying the same. Before you know it, you’ll feel like things are right back to feeling the way they used to.
Asking for help
No matter kind of situation they find themselves in, there are some people who simply cannot stand the idea of reaching out to anyone in their lives for help. However, doing this is actually one of the bravest things that you can do. There is no weakness in needing help from others and if you refuse to ask for it, you’re just going to end up making your own life a lot harder than it needs to be.
It’s incredibly important to understand that there will almost certainly be days where you just want to hide away and give up. It’s okay that this happens, it’s a natural part of dealing with something as difficult as a long-term illness. The key is to keep your eye focused on the present moment and living every second as well as possible. It’s okay to get knocked down from time to time, as long as you keep getting up again.
So as I sit here writing this I honestly don’t know how I feel about having two new illnesses diagnosed. On one hand it is great to have some answers and to have a plan, but on the other I wanted it to be something they could cure you know? However, I wanted to give you all a health update because I feel like you guys know so much that I need to get this out there.
So over the last few months I have seen a headache clinic, and had MRI scans, and seen two rheumatologists. On Wednesday I went to see a new physiotherapist who confirmed that the consultant thought I had a type of arthritis called Spondylitis in my upper spine and neck which is why I get so much pain and stiffness.
She also told me that I have a form of Ehlos Danlos Syndrome called hyper-mobility EDS and will need long term physiotherapy and occupational therapy in order to keep my joints working. I potentially will need a brace for my one thumb and she explained that as long as I work on improving my muscle I should see improvement in the stability of my joints.
I came home feeling overwhelmed and since then my depression has dipped a little and I don’t think it is because of the diagnosis. I mean it is a good thing to know I will be looked after long term, though not by a rheumatologist by the physiotherapist. I don’t know why it has shaken my depression up a bit, I guess it is just a lot to take in to know that I am going to have this pain and these are potentially both illnesses that can get worse.
I think for right now the thing that has upset me the most, is that I cannot do the type of yoga I love or go to yoga class anymore because it will not help my joints. I am feeling down about that, but I will still be doing yoga with Sleepy Santosha on You Tube so that is a good thing! I am determined not to let this news get to me too much so I have things planned to try and keep my spirits up, like getting my hair cut tomorrow and going to my friend’s murder mystery party next week!
So there we are, now you know why I have been a little like a hermit but I am going to be moving forward with a lot of gentle exercise, and working on improving my diet so I can be as healthy as this body allows!
Life is stressful, and we can often focus on the negative. Perhaps because of health issues, problems with work, or any event that gets in the way of our happiness, we can take on this ‘glass half empty mentality.’ Instead, we should practice gratitude. Finding ways to stay positive instead of dwelling on the difficulties in life, we should be able to rise above our stresses and think and feel better as a result. It’s not easy, we know, but when you stop and think about it, there is so much to be thankful for. The following are some of our examples, but you may be able to think of more.
Be thankful for your parents
Our parents aren’t perfect, but then nobody is. Be thankful for what they have taught you, and for the love and care they have shown you in your life. Be sure to tell them too. They won’t be here forever, so before they enter into a care home and leave this mortal coil, tell them you love them, appreciate them, and are thankful for them. Hopefully, your children will do the same to you one day.
Be thankful for the small things
These are the things we often overlook in the day, but sometimes we should slow down and take notice of them. Examples? Be thankful for the sun and the rain; be thankful for the water from your tap and the other things we often take for granted; be thankful for the daily sounds you hear, from birdsong to the laughter in your child; be thankful for the things that make you smile. Your day is packed with these things, so stop and pause at each and offer thanks for every one.
Be thankful for life’s challenges
Admittedly, this is the toughest of them all. How can you be thankful for those things that give you stress and a headache? How can you be thankful for the things that could negatively impact your day? It’s not easy, but then you shouldn’t let them get you down, either. Look at these challenges as things that will help you grow. You have dealt with your challenges before, and you will do so again. Sometimes, the obstacles in our life are there for a reason, but by rising above them, you will become a better person. Get help when you need it, of course, but be thankful for those times when you have developed as a result of your hardships.
Be thankful for your life
God brought you into this life for a purpose, so be thankful to Him. Be thankful for the good things you have done, and the opportunities you have been given. Be thankful for your strengths as well as your weaknesses, as you aren’t supposed to be perfect. Be thankful for what has happened in your life, what is happening today, and what is still to come. You only have one life on this earth, and it’s a precious one. So give thanks today for you!
Keep the thanks coming
There is so much to be thankful for; we need only stop and consider the blessings we have in our life. What about you? Is there anything we have missed? What are you thankful for? Let us know – we will be thankful if you do!
Isn’t it funny how sometimes you take a little break and it totally refreshes you? I have had a daily relationship with God all my life, I have always tried to understand Him and where I stand and for the most part that has been done through prayer. However, after discovering Buddhism a few years ago I have also been using meditation and mindfulness…hence the name of this blog!
However, recently I have been questioning my choices when it comes to my faith and how I communicate with God. I have always believed that there is one God and all the many religions are just human’s ways of trying to understand and to find a way to show our love for them. So to me it doesn’t matter how you worship its where your heart is when you do it that matters and how you live your life.
That is my own personal view on things and though I mainly lean towards the Christian and Buddhist religions I have often questioned things and this has been happening a lot recently. If you read my blog regularly you will know I have been trying to find better ways to treat my illnesses and some of them might be controversial but life is short and I want to try everything that I can.
Now questioning, looking at things like health and religion is in my opinion very normal and human things to do, especially as if you do a quick google search on either of these things you will find millions of websites claiming to have all the answers and they all contradict one another!
So I got a little lost and I decided to take a couple of days off from researching my health, meditating and praying just to be able to step back and see the whole picture. After those days I came back to my faith with renewed sense of being on the right path and that I am going to be heading towards happiness and contentment which is after all what we all long for right? I now have a good sense of the universe and of my place in it and I have come to understand the real meaning of mind, body, spirit and how the yoga I have been practising along with meditation and prayer, and looking at nutrition can really give me the answers.
So though I have been doing the same things for a long time, I have seen them as seperate entities but by focusing on God and taking real care of myself I think I might just start to find myself moving from depression to contentment. I understand talking about faith and the universe and God might make people want to run away screaming, but I started this blog wanting to tie faith and health together, hence the title, and I lost my way a little bit.
So I am here with renewed inspiration and I am excited for the future I hope you will enjoy the journey with me and that I can help inspire you or give you ideas that will help you on your journey!
Last month was pretty hard for me, I lost my grandmother and I turned 40…yeah I did not appreciate that!
I got a little lost in everything, grief kind of took over and I stopped doing a lot of the things that I love. I stopped practising yoga, I stopped eating three meals a day, I stopped looking after myself and I was miserable! I was feeling overwhelmed with grief and I kind of shut down because I couldn’t process everything that happened in such a short space of time.
I was starting to think that would never clear away and that I would be stuck with my depression at a new higher level. I was considering going back to my doctor to get my antidepressants raised, but I am very disillusioned with doctors right now. I have been depressed since I was 14years old, and I have had fibromyalgia and ME since I was in my early twenties and nothing has changed doctors still just throw tablets at me instead of trying to find out why I hurt and how to treat that…but I digress!
So I was thinking of making an appointment and then April came along…
This month felt different, I started reading again, and I got hold of a copy of Medical Medium, I also finished the Heal Chronic Fatigue course I have been doing since January 1st and you can see my videos about that here. The course really started my interest in alternatives to western medicine and I am enjoying the journey that I have started on. I honestly think looking into nutrition and natural remedies might be the way forward to getting some relief.
So now my depression flare has lifted I feel like I can get back to things again, updating this blog weekly, and my You Tube channel twice a week. I did yoga this morning and managed to dust the living room, and though I am sore and tired I feel accomplished. It feels good to do the things that make me happy again and though I know this new way of looking at my illnesses will take time and research and I need to be patient with myself, but I am excited!
So let me know in the comments any tips and tricks or books I should read? I am going to be documenting this journey as I go both here and over on my You Tube so make sure you are subscribed to both so you don’t miss out when I update.
Life can be a struggle for all of us at times. Financial troubles, the stress of running a household and raising kids, relationship pressures, family problems and much more. However if you’re unwell or are coping with chronic pain, then everything is even harder. Some days you struggle getting out of bed or dealing with the simplest of tasks when you’re in pain, so anything you can do to make life a little easier is sure to be a good thing. Here are a few ideas.
Look Into Alternative Therapies
Modern medicine is excellent, and new breakthroughs are happening all the time which can treat and cure all kinds of ailments. However the side effects can sometimes be as unpleasant as the illness itself. In the case of chronic pain, often even the most up to date and powerful medicines still struggle to touch it. Whether you want to reduce your pain medicine or just give it a boost, lots of alternative therapies have been shown to be very effective. Plus, they’re scientifically proven so it’s not like you’re simply relying on hope! Massage therapy, aromatherapy, acupuncture and others are all treatments you could consider. Mindfulness and meditation has also shown to be effective. These can work by teaching you coping mechanisms of dealing with pain, and how to redirect your thoughts and energy. It really is a case of mind over matter which is a powerful thing to be able to do. Group sessions which deal with pain management where you can socialise with others in the same boat and share tips and advice is another option. Anything you can do to cope with or minimise pain is a good thing, it frees up much of your energy to be able to get on with your day instead of it solely revolving around pain.
Manage Your Health Online
These days we can do just about everything online. We work, socialise, we bank online and so much more. So it makes sense that we can now manage much of our health online. From ordering prescriptions from a site like www.simpleonlinepharmacy.co.uk to using online doctor apps during times we’re not able to get to our GP (or it’s out of hours). We can use apps to track medication, we can use devices that monitor blood pressure and blood sugar at home and send this information to our phones or computers. Even fitness devices like Fitbits and other trackers can be helpful. These measure heart rate, exercise levels, sleep quality, you can use them to track your calories, weight, water consumption and much more. There’s plenty we can do to manage our health and conditions online these days, and doing so can certainly make life easier than attending extra doctors appointments. New systems are being put in place to keep your information secure as a patient, and so it’s a simple and safe way to look after yourself and to keep on top of your conditions as much as possible.
Many of us are too proud to accept help, but this really shouldn’t’ be the case. Whether it’s friends or family offering to help you cook or clean when you’re having a difficult day, or the government offering money and assistance to help with your condition- don’t immediately reject it. Your support system just wants you to be happy, and if the shoe were on the other foot, you know you would be the first to help them. If they want to help out, and do something to make your life a little easier then why not graciously take them up on the offer? Popping out to the shops for example might be a small thing for them, but a huge thing for you when it comes to being ill. When it comes to accepting help from the government, this will be money and assistance you are legally entitled to. Don’t feel like you need to turn this down, we’re lucky to live in a part of the world who looks after its citizens when they’re unwell. If you’re allowed this help, then take it if it will make your life easier and it’s something you need. Money could be used to purchase an adapted car, or to modify your home to make it suitable for you with your condition. It could help you to afford travel to doctors and hospitals and pay for your prescriptions. It can simply make your life that bit easier and give you one less thing to worry about.
Yeah so 16th March I turned 40 and I was not exactly happy about it, though with my poor health over the years and my struggles with depression I was determined to enjoy it. This was also my first birthday without my Nan and Grandad I was closest to so I wanted to make sure I made them proud and had fun, so I had to look at pacing for special occasions so I could survive my plans!
I knew I had to do two things so that I could celebrate with both my parents separately and so I decided to spend my birthday, which fell on a Friday, at my favourite museum. The Black Country museum is so cool they have recreated a small Black Country town and it is amazing I just love it and I have a vlog ready to put up on my You Tube channel so make sure you are subscribed!
On the next day I arranged something a little less out in the world and involving so much getting out of my wheelchair, so I decided to go for afternoon tea. I have been doing this for the last few years at Weston Hall and I invited one of my best friends Jess, my mom, her parents and two of her sisters as well as my lovely husband.
I knew that recently I had been working on my fatigue with the Heal Chronic Fatigue Course, so I was wary of letting all that hard work slide by doing too much. I also did not want to end up triggering a flare of my chronic illnesses and I was aware of the fact that my husband has epilepsy. This causes him to be very tired and suffer with headaches and extreme fatigue if he does too much which can trigger a seizure, I have to look after him too.
What I had not factored in was Lee wanting to get a new phone so we ended up going to a local shopping centre on the Thursday and he treated me to some presents because he is so kind. So I went from rarely leaving the house, to being out in the world in potentially loud and anxiety triggering situations for three days in a row. Honestly, I was not sure I would survive, but after resting all day yesterday (Sunday) today I was able to get out of bed and I have noticed I am tired and my pain is up, but it is manageable and yeah…I am pretty amazed so I thought I would share what I did to try and keep on top of everything:
Utilise wheelchairs when possible – The museum I went to supply wheelchairs if needed which is so useful as I cannot walk far and I struggle with pain which means I need to be able to sit down regularly. However, as this is a living museum I did not want to take my own wheelchair as it would get filthy, so after checking their website I was thankful to be able to borrow one there. Checking this took no time and it saved me so much energy and pain because we could wheel me through all the coal and cobbled streets without worrying about it and I could just enjoy!
Be prepared for change – Always make sure you are well rested before a group of events are together, no housework, no exercise just rest in the week or so before to save up spoons just in case your husband decides to take you shopping!
Utilise alternatives – I suffer very badly with social anxiety, so I bought some CBD anxiety tea from my local health shop, when we got home each evening from these things I took a cup. It helped me to relax and rest and it also helped my pain. I also used my heating pad in the evening and massage oils to help my pain and fatigue. We all have different needs, but finding things that help other than tablets from the doctor will support you so much when you are trying to cope.
Schedule rest – This is so important! On all three days I was in bed by 6pm with my heating pad and Netflix just resting and watching TV. Always make sure you have times when you can walk away and rest, whether it is a little nap while your husband keeps family company at Christmas, or just making sure you are in bed extra early, this is so important! If you have busy days make sure you allow time to rest and making sure family understand it is that or things do not happen is essential to cope with being social and chronic pain and fatigue.
Dismissing guilt – It is so easy to feel guilty for having fun, I think society makes the disabled and chronically ill feel like they have to just sit on the sofa and do nothing. However, yes I did see friends and family, yes I ate too many calories and yes these things made me feel more in pain and more tired. But I am of the opinion that my life has value and I refuse to be forced to never see friends and to not have fun for fear of not meeting others expectations. I will not let anyone ruin my great memories and fun I had for my birthday which was so hard for me to cope with but it was lovely and yes I am still smiling!
Be honest – I am lucky, my friends and family understand I have limitations, not everyone has that. So instead of pretending you are well, pushing through the pain and staying up too late so others are happy…be honest. Speak up about needing a wheelchair, or to take a break and grab some tea and extra meds, and do not let anyone make you feel less for needing these things.
Give yourself a break afterwards – Planning fun activities is harder for us spoonies, but do not forget to look after yourself afterwards too. Yesterday I did not get out of bed until lunchtime and I was back in bed by 6pm, I made sure I got all the water I needed and I rested I made sure I had this scheduled and I did not guilt myself or expect anything. Yesterday was a difficult pain and fatigue day, but so worth it for those wonderful memories!
I hope these tips and tricks I utilised will help you to be more social and to celebrate things that need to be celebrated. So many of us stop being social because of our health, but hiding away is detrimental to our mental health and we will lose our ability to keep friends and lose valuable fun memories if we do not take the time to plan and be careful.