So right now I am struggling with the fact that my Nan is nearing the end of her life, she has been one of the biggest influences on my life. I have been lucky enough to have her in my life for so long and I am thankful for that, however grief is creeping in and I am aware that I do not want to fall into the same depression that I did when we lost my Grandad.
So this time I am concentrating on the good, I am thinking through every good memory I have of times with her and remembering how thankful I am that she was chosen to be a part of my life. She taught me about God and how to have faith, she was always there to listen and she never put me down or made fun of my struggles over the years like others did.
My Nan is amazing and I am determined to follow her example and to hold onto God as I go through this journey with her. She always taught me that if you have your faith you have everything you need, and that is so true. My prayer times have been so sacred to me and have helped me so much to get out my feelings as well as to send love and care to her.
I have also been holding onto the Heal Chronic Fatigue course teachings and remembering to turn each negative thought into something good. Buddhism teaches that we should not try to hold onto people or things because they are not going to always be there. I have been using positive affirmations, good memories and positive thoughts to make sure I stay as positive as possible right now.
However, self care is not just about staying postive and being happy, I let my tears fall when they need to but the difference is I do not wallow in it. I let my emotions flow now I do not judge them like I used to and I am being patient with myself as my mind is very scattered right now because I am trying to wrap my head around losing my beloved Nan. Grief can be overwhelming at times, but it is important to treat yourself well, make sure you eat well and often and give in to comfort food sometimes because it is called that for a reason!
Have you been through grief? How did you cope and what things did you learn from that time?
First of all, the neural blocks I spoke about last post are working, my head is a lot nicer without pain, I will do a full review of how I am doing in a week or so to give them a chance.
So, on Wednesday I am off to London to stay with my best friend for two nights and on Thursday we are going to see Hamilton! I love this play so much I definitely got caught up in the amazingness of it and I cannot wait to see it now it is in London as well!
I am not going to be there long, I am going to chill with my best friend she has Chronic Fatigue and Fibromyalgia as well so we rest a lot. We have a lot of similar interests so we are looking forward to spending time together and just having a nice time.
I get there by using the disabled help offered by National rail where you book assistance in advance when you book your ticket. My husband will take me to the station and there we will book in and someone will provide a ramp onto the train and there will be a disabled space for me. I will then get help off the train in London and Louise and her parents will meet me off the train, it is a good system and it works well so long as the station is manned that you are using.
I have done this before and not had problems so I know it will be fine I will take a book and be lost reading and not notice the time pass at all. I quite like the time on the train, it is scary and something I rarely do, but it feels nice to be out alone like I used to be before I got sick and for a little while I can pretend I am not sitting in a wheelchair and I am just going away for a couple of days.
Right now however my mind is buzzing with worries and fears as my generalised anxiety disorder kicks up a fuss and tries to dampen my excitement. I have had my outfits planned out in my head for weeks, and I keep worrying they will look silly or be wrong for the weather or a million other worries that have no basis in reality because I know my outfits are super cute and I will feel so good wearing them. Then there are worries about what to pack, do I need to take 10 pairs of pants? Do I really need extra socks just in case? Which pyjamas will be best…..the list goes on!
So when my brain is working on overdrive how do I stop the worries and get back to being excited?
- Breathe: Yes it might seem simple, but pausing to take deep, slow breaths can slow my mind and help me get back to feeling like I did after my morning meditation.
- Organise: To keep my anxiety down I tend to plan everything in advance, if I know what to pack and when and what baggage I am taking etc it can really help me to stop worrying so much.
- Pray: I stay close to the bible every day, and all through are examples of things working out if people simply take their worries to God and have faith that it will be sorted by God. I find this so comforting to know and I hold onto it with both hands.
- Mindfulness: This is a big part of the Buddhist faith and something that really helps me when my anxiety is pressing in on me. If I take a breath and concentrate on what I can see and hear in that moment it clears the negative and worrying thoughts from my head. In this moment everything is fine and I am safe so why worry?
- Trust: I have stayed with Louise and her family many times, they have always looked after me, spoilt me and made every visit special. They would never let anything happen to me and knowing I can trust them fully goes a long way to easing any crazy scenarios that my brain can come up with!
So after holding those five things close to me, I am managing to keep my anxiety to a minimum and my excitement to see my best friend and to finally see Hamilton on stage high. I will hopefully be doing some kind of video while I am there not sure if it will be a vlog or an interview with my best friend so make sure you are SUBSCRIBED to me to find out.
Well it is that time of year again, I have cards to make, presents to wrap and right now I just want to fast forward to January and be done with it! Now do not get me wrong I am not a Christmas hater and I am not one to be compared to The Grinch at all! In fact, I always loved this time of year and looked forward to seeing my family and giving presents to people I love. I enjoyed the cheesy films and decorating the house….
Then my Grandad died, and my parents split, my Dad now has a new family he is spending Christmas with and my mom is spending it with her friends and my Nan is staying in the home she now lives in for her dementia. This will in fact be my first Christmas not eating dinner with either parent or my Nan, me and my husband are going to be eating Christmas dinner together with our dog in a local pub.
I have decorated our living room, but that was so tiring and the added time and effort it takes to clean now I have extra things to move makes me wonder why I even bothered! I have not yet recieved a single card, and no invitations or planned time with friends leaves me feeling extremely lonely. I feel very lost and nothing feels right and I have this unsettled feeling all the time which is triggering both my depression and anxiety and overall I am just lonely and miserable!
However, I am not the sort of person to give up and I am putting a few things in place to try and keep my mental health under control while I navigate this time:
- Meditation and prayer: I am someone who tries to keep myself centered and I do that by looking to God. I try to spend time every day meditating and talking to God, my faith is something I take very seriously and it really helps me. Now I am not trying to say everyone go find God, but I am saying we all have something that helps keep us grounded whether that is a best friend, favourite song or your faith. Concentrating on and holding onto this really helps in times of trouble so don’t knock it until you try it.
- Exercise: Depression wants us sitting around feeling useless and doing nothing, I find walking around my living room, doing Yin Yoga, or just dancing to a song I like are all things that can really help shake off depression even just for a little while.
- Keeping busy: It literally took me most of today to work up to being bothered to write this blog post, but that is the depression not me who loves writing my blog. It is best to keep busy in order to stop those negative thoughts clouding in and taking over. No matter whether it is learning a new hobby, reading or just planning what next year has to offer try to keep your mind from taking over!
- Mindfulness: Now this is simply taking a moment to concentrate on this moment without judgement. Just stop and take a breath, take in your surroundings and stop those thoughts it really can change everything to just step back and realise we live in this moment and not in the past or future where depression and anxiety live.
- Be thankful: I try every day as I get into bed, to list things I am thankful for over the day. Things like doggy cuddles, cups of tea, being warm, not needing to nap, etc. It really helps to stop looking at what we do not have and starting to appreciate what we do have. This time of year adverts are everywhere, people on social media bragging about buying so many presents, and movies that show the ‘perfect christmas’. In reality, nobody needs 500 presents, kids just want to be loved, and perfection does not exist. Be thankful for what you do have and can do and stop trying to keep up with the Jones’!
- Avoid adverts: This is related to the last one, but I turn off or mute all adverts on TV and you tube, I do not want those toxic 2 minutes in my life! They make me feel like I want so much and none of it is actually needed! Take the pressure off by turning away from adverts and instead take those moments to be mindful, or cuddle the dog!
I hope these small things are manageable for you, and I hope this holiday season is better than you imagined, and if you ever need to talk my emails are always open.
- Samaritans (116 123) operates a 24-hour service available every day of the year. If you prefer to write down how you’re feeling, or if you’re worried about being overheard on the phone, you can email Samaritans at email@example.com.
- Childline (0800 1111) runs a helpline for children and young people in the UK. Calls are free and the number won’t show up on your phone bill.
- PAPYRUS (0800 068 41 41) is a voluntary organisation supporting teenagers and young adults who are feeling suicidal.
- Depression Alliance is a charity for people with depression. It doesn’t have a helpline, but offers a wide range of useful resources and links to other relevant information.
- Students Against Depression is a website for students who are depressed, have a low mood or are having suicidal thoughts.
- Bullying UK is a website for both children and adults affected by bullying.
Yeah my body right now is painful, my joints hurt, my head aches and I am struggling to get enough energy to keep up with the housework and overall this is what we call a flare! Everyone with chronic illness knows what I mean by a flare, it is when your symptoms get worse and new symptoms even sometimes come to join the party!
When this happens it can be very easy to feel like a useless, painful lump on the sofa and wonder why your loved ones put up with you. I often feel guilty that my wonderful husband has to help me and I can fall into depression which as a chronic sufferer usually gets worse too. However, by using logic and finding ways to make life fun, you can get through to the other side without spending every day crying and feeling like the world would work better without you!
- TV shows – I am a Netflix user and right now I am using my flare and bad fatigue as a very good excuse to marathon all those TV shows in my watch list. Right now we are on season 2 of Stranger Things which is absolutely amazing and we are very much enjoying The Crown! Spending time cuddled up with a loved one or an equally cool friend watching awesome TV really distracts you from the negative thoughts that can start crowding in.
- Logic – I find a great way to fight my depression is to use logic, so when the depression tells me I am useless I think about what a good friend I am and how when I am well enough I do housework. If it tells me my husband would be better off without me, I look at him and see how happy he is with me and how silly he is and it pushes it away. Using logic to counter every negative thought works really well and was something an old therapist told me to do.
- Plan your week – Being organised comes naturally to me and is something I have always done, but it doesn’t come naturally to everyone. One thing I suggest is planning your week, split your jobs or chores up into smaller jobs you can manage and do them spread out over the week. Yes this can be frustrating, but it is better to do a little every day than to try and tackle big jobs that either do not get done or defeat you and leave you feeling worse.
- Put things away – One thing that comes with high fatigue is the very real problem of using things and not having the energy to put them away. It can leave your home feeling crowded, untidy and overwhelming, it takes a lot less energy to put one thing away than fifty, so next time you need to get up to go to the toilet or something like that, just put things away and tidy up. Keeping my home looking tidy helps me feel better especially if friends or family turn up!
- Be kind to yourself – This is a hard one, but imagine you are talking to your best friend and she said that she felt really sick all week and hadn’t been able to do housework and she felt really guilty about it…now imagine what you would say to her…treat yourself like your best friend. Be compassionate and loving and caring to yourself and always have a treat in the cupboard for emergencies!
- You can cry if you want to – No matter if you do all these things there will always be days when nothing helps, so shout at your illness not your loved ones and let those tears out. Crying is really healthy and not a sign of weakness at all like our society likes to make out. Do not be afraid to put some sad movies on and let it all out trust me the next day will feel better if you do not bottle everything up!
I hope if you are in a flare these help you like they have helped me and I hope things settle down very soon. Please leave me any coping solutions you use when your illnesses flare up down in the comments I would love to find some other ways to help.
First of all I apologise for not writing a post last week! There was supposed to be someone to come and assess me for PIP the new disability benefit in the UK. I was so stressed it made my pain worse, and so I was struggling with so much…and then on top of that they just did not show up and did not call to explain! I have another appointment but I am not looking forward to all the stress it will bring. Anyway, yes that is why I did not post anything last week, I apologise.
So, I have been practising yoga now for about six years and for most of that time I have done it daily using the teacher Yoga with Adriene I have spoken about her many times. She is an amazing teacher and I love her style, however her videos are not aimed at the Spoonie community and so it can be difficult to keep up.
I often found that I had to choose whether to do yoga or some housework and practising daily was impossible. I love yoga and I want to do it daily it is my main form of exercise, it keeps my body supple and helps me to be in the moment. I use it as part of my religion as I am Christian Buddist and so I really wanted to find a gentle practice that I could do every day and it would not make me too tired.
Then Adriene uploaded a ‘Yin yoga’ routine which is a form of yoga I had not heard of before:
“Yin yoga is a slow-paced style of yoga with postures, or asanas, that are held for longer periods of time—for beginners, it may range from 45 seconds to two minutes; more advanced practitioners may stay in one asana for five minutes or more.”
I really enjoyed it and though it is not what people picture when they think of yoga I really got so much out of it because it moved my body but was gentle and did not tire me out….so I started hunting for different yoga teachers on You Tube who practiced more gentle routines that could help me to listen to my body more and not make my illnesses worse.
I found a couple of teachers so far, Sleepy Santosha is a woman who is a Spoonie and because of that her routines are designed for people with illnesses. She has a very soothing style, the routines are awesome and she has some specifically for Chronic Fatigue Syndrome and Fibromyalgia. Chakrapod is the another teacher who has routines for specific illnesses but also some that are a little tougher and more traditional, I love her style she is really chill and I would recommend her. I have some others as well and you can find the exercise routines I do in a playlist HERE
Overall, this change has bought me closer to what yoga is really about, it is not about getting abs and doing crazy poses that you can show off! Yoga is anything where you are concentrated on breath and movement, and there are lots of yoga routines you can actually do in bed. This change in my attitude to yoga means I can now do yoga every day and I can still manage a little housework, my symptoms are more level and do not fluctuate as much as they were when I was trying to push myself.
Do you have any yoga teachers like this that you would recommend? If you try any of the yoga routines in my list let me know I would love to know what you think of them.
So as you might know, if you have been reading my blog for a while, I have been struggling with my depression for a while now. Our living room has felt cramped and clutttered for a while now and so me and my husband thought we would have a change. We cancelled Sky TV because we never watched it, and that meant the TV did not have to be next to the window like it always has been.
We donated some furniture and things and that freed us up to bring down Lee’s grandmother’s rocking chair and use some savings to get a couple of antiques. Now after a couple days of craziness in the living room the space feels bigger and calmer. We both love spending time in there now and nothing beats feeling relaxed and calm in your own living room.
Now it might seem strange, but I have also found my mood has drastically changed since the change round as well! I had not imagined it would make a difference, but honestly I do feel lighter and happier and I don’t know maybe the old addage ‘a change is as good as a rest’ is true?
Now I am not suggesting we all go around changing our whole lives around, but maybe now and then we need to take care of our surroundings:
- Pull furniture out and give it a good clean
- Declutter your space and get organised
- Donate any furniture or ornaments you are not attached to
- paint or recover old furniture to give it a new lease on life
- Get some new throw pillows or blankets/throws to brighten up the area
I hope this new brighter mood lasts, but even if it doesn’t I hope that I can always appreciate the things around me. Buddhism and Christianity teach that we should not hoard things or become too attached to them…maybe that is why I feel so much lighter now?
First of all I apologise for this post coming to you a little late, when you read this post I hope you will understand why I needed a little time to process things.
So last year my beloved Grandad passed away, he was my best friend and I spent much of my childhood in their bungalow with him and my Nan. Losing him was hard on everyone in the family of course and it took us some time to recover from losing him in our lives.
What we hadn’t known while he was alive was how bad my Nan’s Alzheimer had become because he would cover for her. My Dad has been incredible taking care of her, but it came to a point when she was not safe at the bungalow alone with people just popping in anymore.
She was assessed and has a place in a wonderful residential home not too far from us, where she will be safe and cared for 24/7. It will take a lot of pressure off my Dad and I hope will allow him to get some of his relationship with her back. He was working so hard to look after her that I could tell he was beginning to resent her because he was so tired and missing out on things. I am so glad that she will be safe and he will be able to relax knowing she is.
However, her getting this place means letting go of the bungalow she lived in with Grandad and it almost feels to me like losing Grandad all over again. My Nan has kept a few posessions, and me, my Dad and his brother have taken the things that are treasures to us. I was going to go to the bungalow with my dad to look for myself, but in the end this was not possible and in a way I was glad to have only happy memories of the place I spent much of my childhood.
I now have the small table that I ate on as a child, ornaments and trinkets that I saw about them, and pictures that meant so much to me as I grew up. I will treasure all of these things and the memories they hold for me every day, however getting them feels so sad and I am struggling to process by it is upsetting me so much when I should be thankful my Nan is safe and not feeling so down.
I am a Buddhist Christian, and as such I try to live in the moment, I am still learning this valuable skill, but these events have shown me I am so attached to the things that represent those I care for. I have the memories and they cannot be replaced, but I love having my Nan and Grandad’s things about me. Does this make me too materialistic? I am very reflective and a little lost right now, but I know one day I will look back and see a big lesson this experience taught me.
The last year has been incredibly hard for me, I lost my Granddad, I had a flare of my fibromyalgia and my depression crashed down on me. I stopped really caring about how my house looked, how clean and tidy it was, I stopped looking after myself and just got lost in symptoms, and depression.
After recently seeing a psychic (HERE is a video about that) I found my depression and grief lifted and I started to realise that I wanted my life back. I might have constant pain, anxiety, fatigue and neurological problems, but I like my life and I am happy. I don’t expect a lot from life and all I want is to get back to daily yoga, meditation, and housework and to have enough energy to cook a healthy meal in the evening.
So how am I going to manage this when my flare has left me with more pain and fatigue though the worst of it has eased along with the depression. Well, if you have been following my blog for a while you will know that I am a planner, and this is how I am going to get my routines back.
I have my week ahead planned, I know what I am going to do and how, and that has left me feeling far less worried and overwhelmed. I have remade up my natural cleaning products and I am back to my determination to lessen the amount of chemicals in my home. I am hoping that with my new plans, my determined nature and lots of breaks I will be able to keep up with the daily routine I started today.
I woke up and took my medications at the usual time and then hit the yoga mat for a gentle 30minute practice, I then lay down and followed a 15minute guided meditation and then a short bible study. I then ate a yummy smoothie bowl and rested for a while before cleaning my living room. By the time I had done these things it was after 1pm and I was amazed at how long these few things took me, however I felt incredibly proud of myself for taking my time and listening to my body. After a shower, I came here and wrote this blog, I am hopeful that by breaking things into shorter tasks and being organised I can do this routine every day.
What I want to say is, life is hard with chronic illness, they grind you down and can become so hard to live with, but if you keep pushing and keep motivated you can still achieve your goals!
Wow is it just me or is the world getting crazier? Here in the UK we have had a concert in Manchester bombed and now stabbings and people hit with a van in London…I am in a small town but I have friends all over and who knows where the next attack is going to come from?
Now I know this will go against the first sentence I wrote up there, but I in fact do not think the world is getting crazier. I have lived through the IRA attacks, I have seen bombings and shootings and wars all over the world and I ask myself, when will we learn? People seem to be nastier and more outspoken, maybe because of the internet or maybe the internet has just given nasty people an outlet?
Either way for me personally seeing that nothing has changed leaves me quaking in my boots afraid to go out of the house to walk my dog and feeling very small and scared. I have been diagnosed with Generalised Anxiety Disorder, which is characterised by WIKIPEDIA as:
“Generalized anxiety disorder (GAD) is an anxiety disorder characterized by excessive, uncontrollable and often irrational worry, that is, apprehensive expectation about events or activities. … These symptoms must be consistent and ongoing, persisting at least six months, for a formal diagnosis of GAD.”
I have had this my whole life and was diagnosed about six years ago with it by a therapist who gave me a lot of coping mechanisms and tips and tricks to learn to live with it. In the last few years, I have worked hard to be able to go on short walks with Gizmo alone, and to be able to speak to people in shops etc.
However, these attacks have sent me scurrying back into my home to hide away, the thought of going away to London for a convention is in question and I feel like terror is really setting me back. The problem is that these evil people can strike at any time, we do not know who they are or when they are doing this which is why it is such a shock when it happens. I am worried that this will undo all the hard work I have put in and I really do not want that to happen.
I am hoping that I can set myself small goals, and use logic to try and stop myself slipping backwards, and I can only pray that these attacks stop soon. I hope we as humans can be good and can learn from the past, I do not understand war and I never want to know it all we can do is put our faith in the government to keep us safe and to protect us.
Stay safe everyone