Trying to live with Chronic Illness

generalised anxiety disorder

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

My attitude to Yoga has changed, finally I am listening to my body and reaping the rewards

Photo by Dingzeyu Li on Unsplash

Hey everybody!

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.

Namaste xxx

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Hey everybody!

Yes September is here, the leaves are starting to turn, and there are Halloween decorations in the shops! It is my favourite time of the year, so much cosier and I absolutely love the relief of getting away from the heat of summer and the settling down of my symptoms.

As I usually do when there is a big change in weather, I have gone through my wardrobe and got rid of things…and replaced them with things from the sales! Usually I buy a couple of things and leave it at that but this time I have decided to change my style a lot more than I ever have before.

My style is usually grungy and hippy with not a lot of focus on what I wear because I rarely go out and even more rarely ever see anyone! However, after watching people on you tube who wear more of a vintage style and are confident enough to wear more feminine and less ‘fashionable’ clothing that can be found in charity shops and antique places.

Now I have always wanted to dress more 1930s-50s not rockabilly, but more authentic? However, I stand out a lot when I am in a wheelchair or using my walking stick and I kind of always wanted to hide away? Well no more!!!

If you watch my latest You tube video HERE then you will see some of the items I managed to get in sales to start off my collection. I am going to be thrifting and keeping my peepers peeled for cheap places to get this sort of clothing. I love that these pieces suit my hourglass shape more and they will not go out of fashion so I will be able to wear them without worry next year.

I have been changing things up a lot in my life recently and it feels so good to get motivated and get my style and our home looking more like we want it to. I feel so much more inspired and motivated, so maybe if you feel a bit stagnent it is time to clear things out and redecorate a room, or just donate some old clothes that you no longer wear?

Namaste xxx

Photo by Sasha • Instagram.com/sanfrancisco on Unsplash

Hey everybody!

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?

Namaste xxx

Photo by Carmen Marxuach on Unsplash

Hi Everyone!

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.

Namaste xxx

Photo by Nicole Mason on Unsplash

Hi everybody!

Over the last month or so my depression has flared, I have had chronic depression since I was 14years old and usually I can battle it, but sometimes it just gets to be too much. I have often fallen into letting my depression take over and stop me from doing the things I love and enjoy. It can even stop me bothering to shower or clean my teeth and that leads to me just feeling even worse!

I have come to realise that this is how depression works, it stops you wanting to do the things that can help you to feel better. So this time I fought back and followed the following steps as a way to stop it taking over totally:

  • Eat healthy food: It is easy to skip meals and snack on junk food when you feel depressed, but this time I used an app called Lifesum to track my food and to make sure that I am eating the right things and drinking enough water every day.
  • Get enough sleep: Now when you are plagued with negative thoughts and worries sleep often stays away. I have found listening to relaxing music, or podcasts or audiobooks can stop you being able to think and allow you to relax enough to rest if not to sleep.
  • Limit time online: These days this can be hard, but spending too long online, scrolling through social media etc, has been shown in many studies to contribute to depression. If you want to fight depression do not give it the tools to bring you down!
  • Be kind to yourself: This means something different to everyone, but it does not mean shopping and eating! This means small things like taking a bath, using body creams of your favourite scent, having a little chocolate or watching a favourite movie.
  • Fresh air: Getting out of the house for a short walk, preferably in nature if possible, can really help to ease your mind and help you to feel less like a blob on the sofa and more like a human who is struggling but fighting every step of the way.
  • Plan your day: Every day plan a few tasks, no matter how small even if it is make the bed, wash my face, take a short walk. Keeping busy and feeling like you have achieved something no matter how small can make all the difference to how you feel about yourself at the end of the day.
  • Be thankful: Every night as you get comfortable in bed, say to yourself three things you are thankful for, preferably one of them is about yourself. This helps you to be grateful for what you do have and to see at least one good thing about yourself that can poke through the negative thoughts.

These are the things that helped me, and the depression is now starting to lift off me thankfully. What are the tips and tricks you utilise when you feel depressed?

Namaste xxx

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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