Trying to live with Chronic Illness

mental health

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Photo by Hans Vivek on Unsplash

Hey everybody!

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?

Namaste xxx

 

Photo by Eva Dang on Unsplash

Hey everybody!

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?

  1. 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.
  2. 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.
  3. 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.
  4. 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?
  5. 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.

Namaste xxx

Hey everybody!
I was recently contacted by betterhelp.com an online counselling website and app, who wondered if I would be interested in posting the below infographic to spread awareness of high functioning depression. I said yes right away because I personally have suffered with chronic depression since I was fourteen years old and for a long time I wasn’t sure I had depression. Most of the time when this illness is shown on TV or in movies, people don’t get out of bed or get anything done, but if the figures are to be believed this is not how depression usually presents itself.

It is important that we all take our mental health seriously, I know many people love the idea of counselling and therapy but don’t have the time. Better Help could be just the answer you are looking for, especially if you look at the image and work out this could be what you have! The website offers therapy online, or through an app on your phone or ipad and so it could be done any time to fit in with your life. I hope this is of some help in getting the word out about this complicated illness and encourages people to at least check out the website which has some great articles to read even if you don’t think you are ready for therapy.

Namaste xxx

Photo by Xavier Sotomayor on Unsplash

Hey everybody!

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!

Namaste xxx

Photo by Erwan Hesry on Unsplash

Hey everybody!

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:

  1. 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.
  2. 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.
  3. 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!
  4. 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.
  5. 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’!
  6. 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.

Namaste xxx

  • 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 jo@samaritans.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.

Photo by Damian Zaleski on Unsplash

Hey everybody!

So a couple of weeks ago I posted THIS post, in it I spoke of how I feel let down since my diagnosis was changed from Multiple Sclerosis to Fibromyalgia, Chronic Fatigue Syndrome, and neurological problems they did not look into. I felt strange doing it, but I sent the surgery a link to the article and soon was called to see the doctor to discuss it.

That appointment was yesterday and I really do not know how I feel about how it went!

They listened to me and referred me to people to try and help I have been referred to a rheumatologist to hopefully take over the care of my Fibromyalgia. I have also been referred to have ultrasounds on my shoulders to check what is going on and why I am getting so much pain and cracking with them.

I have also been referred to a therapist, I think because of my chronic depression which has flared, but I wonder if they are thinking some of my symptoms are in my head? She did say at one point that Fibromyalgia is a ‘dumping illness’ that is used when no other diagnosis can be found and that it cannot be cured.

I sometimes feel as if Doctors being scientists are only interested in illnesses that can be cured or measured. As my illnesses are mainly causing me extreme pain and fatigue neither of which can be cured or measured they really do not know what to do with me!

I sit here before you frustrated but slightly hopeful, maybe something will be found that they can latch onto and that will get me the help I want. Or maybe who I have been referred to will know the latest research and will know how to deal with my neck and shoulder pain which causes headaches and pain without just throwing medication at me???

I will keep you all informed as things progress, I am unsure what to do about the fact the doctor prescribed me Morphine for pain and feel a little disappointed that something else was not suggested…still I am willing to try anything at this point and cling to the hope that next year will bring me some good care.

Namaste xxx

Photo by Hush Naidoo on Unsplash

Hey everybody!

So a couple of posts ago HERE, I talked about how I felt the NHS had let me down because since my diagnosis was changed from Multiple Sclerosis to Fibromyalgia and Chronic Fatigue Syndrome. I have had hardly any medical intervention since then and have felt like nobody cared, this started me feeling depressed and lost and honestly I had stopped going to see my GP because I never got answers I wanted and I just put up with worsening symptoms.

So after thinking about it for a little bit, I sent an email to my doctor’s surgery with an explanation and a link to that post. I wanted to see if it would make a difference and I wanted to make sure that this kind of thing did not happen to anyone else. I suspected that I simply fell through the cracks of an already overstretched and underfunded NHS, but I am still a human and it was about time I needed to be my own advocate.

I heard back early the next day from the surgery manager who said they were very sorry about how I felt and the doctor wanted to see me. I got a phone call later that day and I have an appointment to discuss my concerns and hopefully get some of my symptoms treated and referred to the right people.

This really did reinforce for me that I am my own advocate, and though I know the NHS is given a raw deal by the government, and though I used to be on the other side, I deserve to be treated better. I read a lot of blogs run by other chronic illness warriors and I follow them on You Tube and I see the sort of treatments that they recieve and I have been given none of those options. So this week I am going to be researching and printing things off and taking it all to the doctors because I need more than I am getting.

So this was a big lesson to myself, but also I hope that it inspires all of you that if you are not feeling supported or well treated by your medical team speak up! I am going to be taking my husband with me to back me up and I am going to make sure together we are heard…nobody can speak up for you unless you try to speak up for yourself.

So if there is any research or treatments you think I need to look into leave me links in the comments and I will get researching!

Namaste xxx

Photo by Jonathan Fink on Unsplash

Hey everybody!

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!

  1. 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.
  2. 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.
  3. 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.
  4. 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!
  5. 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!
  6. 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.

Namaste xxx

Depression can set in when you feel let down by the people who are supposed to help you

Photo by Hush Naidoo on Unsplash

Hi everybody!

So this is a difficult thing for me to say, I was trained as a nurse in the NHS and I worked with them for a couple of years before I got sick. I love that we have a national health service that is free on point of contact, anyone here can be seen and treated for any health condition without having to worry about how to pay. I hate that the Conservatives are starving it of money and resources but I hope that it can be saved because healthcare should not be something you forego because of the cost!

When I first became sick I was treated for an infected insect bite, but honestly they did not know what was wrong or why my left leg was numb and painful. I was referred to many doctors before I was diagnosed with Multiple Sclerosis in 2005 if memory serves. I saw therapists, MS specialist nurses, physiotherapists and I had a neurologist who treated me as well. I injected myself daily with medications, I had times in hospital, MRI scans, and a lot of support from my GP.

Then in 2015 I was called in to see my neurologist who told me that I had been misdiagnosed and though I had neurological problems they would discharge me as it had been too long and they couldn’t look into it. So I was once again lost without a diagnosis, however my GP suspected Fibromyalgia and referred me to a rheumatologist who diagnosed me officially with fibromyalgia, but I have not seen that doctor since.

In the time since then I have not had a main doctor who has been a specialist and looked after me, I have seen physiotherapists a couple of times, and though I have been told by a couple of different people they suspect early arthritis of some kind I have not been referred to anyone. My migraines and headaches that are almost daily now have not been treated though I have told my GP about them, and I have asked to be referred to someone to be in charge of my illness and treatment I am still waiting.

I feel incredibly depressed and as if nobody cares, I am in constant pain, fatigue that leaves it impossible for me to do housework or gentle exercise daily, headaches leave me exhausted and I honestly hate it! I have all the same symptoms, if not more now than I did back then when my diagnosis changed and yet my treatment has gone from feeling supported and cared for to nothing. I feel as if nobody cares in the NHS that I am suffering and crying in pain at some point most days…and yet we do not have the money to go private it is not even an option.

I have no idea what I am meant to do in order for them to listen and care for me again, I am sick and tired of being so useless and lost and all I want is something more than more medications thrown at me. I feel let down by the NHS, either because of bad management or just lack of understanding about this complicated illness…but whatever it is I am left here feeling depressed and wanting to get a little of my life back so I can maybe help my husband more and feel like a functioning and worthwhile human, is that really asking too much?

Namaste xxx

Photo by Anete Lūsiņa on Unsplash

Hi everybody!

So yesterday an old friend from school came round to see me for a cup of tea and a catch up. Now to most people this might seem very boring and not out of the ordinary at all but it meant so much to me and I want to explain why.

First of all, she got in touch with me because she found my blog, and when she did and started reading she was amazed at how similar our symptoms and experiences with chronic pain and fatigue were. She emailed me and we started to talk and arranged for her to come visit, and if you have been reading my articles for a while you will know how lonely I get so this was something I was so excited for!

I was nervous because of the amount of time that had passed since we had last seen one another, but I needn’t have. We chatted away and in no time found ourselves amazed at how similar our chronic illness journeys were and how we both have struggled with accepting our illnesses and having family understand why we are sick.

I started to think about all the chronic illness warriors that I know through social media, you tube and this blog and wondered just how similar our paths seem to be. It in incredible that no matter what our diagnosis, we all walk the same path and it is this fact that connects us all. I started to realise that so many of us are in reality so isolated and alone, spending weeks at times not seeing friends or even leaving the house just like me!

Seeing my friend was wonderful, I felt so tired and in pain afterwards but I have not stopped smiling since because I am so happy! I feel like I am part of a worldwide network of chronic illness warriors who have many different illnesses and yet we all walk a similar path! So if you ever feel lonely or just need to talk my instagram, twitter, facebook and my email all have ways to get in touch with me and I would love to connect with you!

Namaste xxx

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Hello

Hi there I am Beverley, I am a Buddhist Christian trying to find a way to live with Fibromyalgia, Chronic Fatigue Syndrome, 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 once a week.

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