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.
So first of all I want to apologise for not updating my blog for a week or so, unfortunately I needed a little time to look after my mental health after losing my Grandmother. She was a big part of my life, in fact I think I talked about her in my last post and I am finding the grief hard.I have taken losing her and my Grandad pretty badly because they were two people who taught me so much and loved me so completely and without conditions.
It is horrible because I have moments where I forget they are gone and I get a idea to call or suggest we visit, but then I remember…
I think anyone who is dealing with grief knows that feeling, like hearing it all over again, and right now it is hard because the funeral isn’t until the end of the month so that is looming over me. Added onto that I have my birthday this week, I am turning 40 and most people I wanted to celebrate with me cannot make it and I think I just have a lot of feelings from childhood parties gone wrong kicking up again!
I think a lot of people who suffer with anxiety and depression know this well, something happens and instead of just wanting to deal with that one thing your brain decides to think of a million other times in your past. Negative thoughts and memories are something I deal with every day and something that I honestly fight with and battle with constantly. Most people who met me would not think that, but even as I smile inside there is a million thoughts and feelings fighting to take that smile away from me. I am in the process of starting therapy again, finally after a life with Generalised Anxiety Disorder and Depression since the age of 14 the doctor thought I might need long term therapy wow never would have thought it!!
Opening up to someone new about your past and the issues you have leaves you feeling so exposed and raw, so losing one of my close family at the same time has been very hard. I think it is hard at any time, but talking about it along with retelling my past has left me feeling very small and lost at times.
I really hope however, that I can push through this time in a healthy way and this is how I am going to try and do that:
- Talking – I think it is important to be open and honest about my thoughts and feelings at the moment and I am talking things through with my husband and therapist because I cannot hold this all in.
- Meditation – I try to meditate every day to protect myself and to keep my mind clear, it gives me a chance to slow down and just concentrate on my breathing. I also found some amazing guided meditations for grief on You Tube.
- Mindfulness – Staying in this moment and not getting lost in emotions and thoughts is something that does not come easily, however I find it helps my anxiety, which is thinking about the future, and depression, which is thinking about the past. I have been working on this because I am a Buddhist, but it is also a big part of what my therapists have suggested.
- Keeping busy – Now this one can be difficult with pain and fatigue, both of which are worse because of the grief, but it is important to at least be reading or watching a TV show sitting and thinking is the worst thing for someone suffering with their mental health so definitely bear that in mind.
I hope this post has not bought you down or upset anyone, but I think far too much in our society we are afraid of death and talking about mental health issues and right now that is what is happening in my life. Yes it is difficult, but the more we talk about it the less stigma there will be and more people will be able to get the help they need without worry or fear. Next Monday I will tell you all about my wonderful birthday celebrations and hopefully I will cope with turning 40 without running away hehe
Wow I sometimes feel a little frazzled and a little lost, like I am too small for this world and I don’t know what I am doing. I have generalised anxiety disorder, which basically means my mind makes me feel anxious all the time and my body is always in fight or flight mode! Even without Fibromyalgia and Chronic Fatigue Syndrome that in itself is pretty exhausting!
So right now my anxiety is really kicking up a storm, I am learning things about my childhood that I either blotted out or was in denial about and my Grandmother is in a hospice coming to the end of her life. Seeing her so thin with Leukaemia and her dementia really playing her up is so hard because she was always such a strong woman in my life.
I remember her telling me that she once spent time in a mental health facility back in the 1960s I think it was. Back then they were not cared for or looked after very well and she had been ashamed of her experience. However, knowing that she too had a breakdown and suffered with depression somehow gave me strength and left me feeling less alone when others around me were saying I was just being difficult or dramatic.
My grandmother was the person who taught me about God and faith and how I can cling to God in the hard times. Many hours were spent with the two of us looking things up in the bible to answer the very deep and searching questions I was not sure how to answer. She would even call vicars she knew and ask them if they could help and she was just always there to turn to for answers….she made the greatest mince pies in the world too!!
But now I have to come to the realisation that there will be no more mince pies, and without her and Grandad nobody to call on to answer my many questions…I feel kind of adrift in the ocean of life, my grandparents were my anchor and compass and now I am out there alone and I don’t even know how to use a compass! I guess right now I am feeling a lot of emotions and to try and get this all to make sense is really really hard!
However, I am not someone to take emotional upheaval lying down, I am a fighter and I know that this is just another step on my journey. I might feel overwhelmed and lost right now, but so long as I keep the things they taught me close to my heart I cannot go far wrong. I will keep my eyes on God, and I have my own bible so I can search through to find the answers it just won’t be quite as fun!
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?
So it is getting closer to Christmas, with plans for visiting relatives and going out for dinner on the day as well as visiting my elderly Nan are all hovering over me. Of course, my body has chosen right now to get a cold and to hit me hard with fatigue that leaves me laying on the sofa unable to think straight no matter get dinner going!
My wonderful husband has epilepsy and his medications make him drowsy and tired, yet he comes home from work and makes dinner, helps me undress and get into bed and listens to me natter on and on about TV shows and Instagram and whatever else is in my head!
The problem is that I am constantly hit with guilt, I am forever saying sorry to him and that drives him insane! But I do feel so guilty, about him having to cook after being at work all day and I just hate that I feel like a useless blob on the sofa!
So much of our self-worth in society is tied up in what we do for a living, where we live, how we look and if you are unable to keep up, judgement comes from inside as well as from society at large. I find even my mother, who has Multiple Sclerosis, give me looks and makes comments when I ask Lee to pass me something or to help me. So when it even comes from those we think should understand how are we as chronic illness sufferers meant to keep our heads up and not drown in guilt?
I know many of you will understand what I am saying and will probably agree with a lot of points I have said, but my question is if we cannot do the housework and we need to put on family and friends how do we push passed this guilt that comes with fatigue? How do I as a woman who prides herself on having a clean and tidy house, deal with being unable to keep up with keeping everywhere clean? How do I pass jobs on to my husband when he is already tired from work and not feel like the most awful failing housewife?
Usually, I like to give tips and ideas but this time it is me asking for them: How do you keep your self worth going when you are unable to work or keep up with housework? How do you push passed the guilt that comes with times of extreme fatigue? Answers in the comments please? I will hopefully do a follow up to this post soon with some conclusions and helpful ideas to help my fellow Spoonies keep their self worth high!
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 firstname.lastname@example.org.
- 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 sorry I needed to take a little break but it has to be expected when you run a blog with chronic illnesses! Also I had my PIP assessment which is to see if I qualify for a benefit here in the UK and the stress and worry from that has not helped!
However, here I am half asleep and frankly p***ed off!!! My fatigue has flared and I honestly feel like I am trapped inside my body! I try to keep up with my housework and to do things that make me feel human, like shower and wash my face and get dressed, but it is a constant battle! I wake up every morning after sleeping like the dead feeling just as tired as the night before and yet I have things I need to do on that day!
I find myself feeling so guilty when my husband is at work and I am just lying about doing nothing but staring into space. I wonder if he would be happier without me and if I am just a useless lump. Then I have to try and shake off the depression and try not to do an impression of Eeyore so I can hopefully pull myself out of this slump and get things done.
I wish I could say this will be a useful and positive post but honestly I am just fed up! I have things I want to get done, like my yoga practice and bible study and a little housework just like I could before and yet I feel so tired and my body feels so heavy I can barely think straight no matter get jobs done!
So instead of giving out tips and tricks of how I deal with things I am reaching out to the chronic illness community and asking for tips? Do you suffer with fatigue and if you do how do you make sure that jobs and goals do not just pile up while you nap? Leave me some comments here or on social media links are around let me know please? I need something to help before I go mad!
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.
First of all if you are planning to watch 13 Reasons Why and have not yet seen it this post will contain spoilers so come back to this after watching. Also, there will be mentions of alcoholism, social anxiety, depression, and suicide in here so please be aware of that if you choose to continue.
So in 2 days I had watched all the episodes and the documentary of the TV show 13 Reasons Why. This show is about a girl called Hannah who leaves behind 13 cassette tapes each one singling out a different person and why they are part of the reason she decided to commit suicide. The show sugar-coats nothing, it is hard to watch, there are times I had to pause it and walk away, or I fast forwarded, cried…yeah it is a tough, but I feel important watch.
Now, when I was a teenager I was very much a mixture of Hannah and Clay, I was incredibly depressed, I suffered with social anxiety and I was suicidal. I used alcohol as an escape and I am sad to say that I was at times suicidal. I was nervous to watch this show as I worried that it would trigger old feelings and thoughts and it did but I coped with it in a very unexpected way…I became thankful!
There is a scene where Hannah and Clay both imagine what their futures could be like if she had not killed herself. This is a really sad scene, yes we want to see this glimpse, but also knowing they could never have that now was so upsetting. That scene got me thinking a lot about the times I was suicidal and wondered if I could have ever imagined where I am now?
Back then life seemed so bleak, the last time I considered ending my life I was in my early 20s, my fiance at the time had left me, I was living with my parents again and I was sick. I had not been living with my illnesses long and I was still waiting for diagnosis and to be honest everything I tried I seemed to fail at. Also as an added bonus, my father became incredibly frustrated and angry to see me so depressed and would shout and say things that I am sure now as I look back he would immediately regret.
But not long after this I started dating, I joined two dating sites and had a few dates on one and only one date on the other…that one date was my soulmate Lee and we have been married seven years! He looks after me, he is kind and funny and totally gets that I have illnesses but he never makes me feel like a burden. I have a wonderful dog, Gizmo, we live in a really lovely house and we are incredibly happy.
Over the past few years I have worked hard on my social anxiety, I have had counselling, I can go out for a short walk with my dog, I can even talk to a shop assistant without wanting to have a total breakdown. Every day I struggle with my anxiety and depression but I have the tools now to cope with them and to work through them. I might not be able to work, but my self-worth comes from my family, my friendships and how good of a person I am.
13 Reasons Why made me feel so incredibly thankful that I did not choose the path that Hannah did, I kept fighting and things got better. As a teenager I was not able to cope with this harsh and stressful world, but now I have the support and the tools that make it easier.