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 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?
So my chronic illness journey, like for many, has been complicated! It took them 5 years to diagnose me with Multiple Sclerosis, and then 10 years after that they said they were wrong and discharged me from Neurology. I was referred to a Rheumatologist and finally diagnosed with Fibromyalgia…but then they discharged me too…
Since then I have relied heavily on my local GP, and intermittent referrals to physiotherapy to deal with my illness. So I went from ten years with a specialist nurse, specialist neurologist, and psychologist to nothing and I have often questioned why but never really had much luck getting an answer.
Today I returned to my GP with new symptoms:
- Pressure migraines thanks to the pain and cramping I experience from Fibro in my shoulders and neck
- Dizzy spells
- Almost passing out if I bend down and then stand up again
Honestly I was sure that I would not get much help from the doctor because I never do and it was a new GP I saw, I wish I could say I was hopeful and determined but after almost 3 years with no real back up for my illnesses I had more or less given up.
However, when I saw the GP she listened to me and looked back in my files and agreed that I should have more help and a regular specialist who can support me more with my symptoms and who will help me. It felt like such a relief to be taken seriously and listened to and to be told she would make sure I was referred to someone and got the help I need.
I really felt so much lighter and almost like crying as I left the doctors because I have just been told to drink more water, light exercise and to maybe have a referral to a physiotherapist. It really felt like the moment my diagnosis changed so did the level of care I received, but my symptoms and my actual experiences with the illness did not change. I am so thankful that I got to see a new doctor today and I am hopeful that I will get better care and be taken more seriously from now on.
This week I wanted to talk about fatigue and how hard it can be to just want to get out of a warm, comfortable bed when all you want to do is rest. When you wake every morning in pain, your joints stiff, your head aching and every limb hurting on top of extreme fatigue it is so hard to want to get up and get your jobs done.
I spoke on this weeks Chronic Illness Video (HERE) about how fatigue feels, it is not just being tired, or how you feel if you couldn’t get comfortable at night so check that out if you think it is! Fatigue is deep inside extreme tiredness that makes it impossible to want to do anything.
Now if you have been reading my blogs for a while, you will know that I am a very motivated person and if I set myself goals I will do anything to achieve them. The problem comes, when your body is heavy and tired and you cannot think straight enough that you are still a person who wants to do things and be a human! You have dreams and goals and when day after day you are not well enough to achieve them that can be incredibly demoralising and depressing.
It has taken me a long time to come to terms with this, I have been sick since 2002 and I have just started to be able to do it! But, being patient and not letting guilt take over can be the first steps in accepting what you can and cannot do and then coming to peace with your illness and your goals.
In Buddhism, acceptance and peace are the main goals and applying that to my illnesses has helped me to relax that inner need to do the housework every day and do a yoga routine every day and take the dog out and cook healthy dinners and…..There will always be ‘ands’ but take a breath and remember that being the perfect person is not something we can ever achieve.
I am reading a book called ‘How to live well with chronic pain and illness: A mindful guide’ by Toni Bernhard and to quote her:
“The unrealistically high standard at work here is that we don’t think we should be chronically ill. Even though 130 million people suffer from chronic illness in the United States alone, we live in a culture that repeatedly suggests that, with proper diet and lifestyle changes, no one need be sick and no one need be in pain. When we’re not living up to what we perceive to be that cultural standard, we feel embarrassed.”
For me that really hit the nail on the head, it is society constantly telling us that we should be perfect, loved, and happy if we just eat the right foods, do the right exercise, everything will be sunshine and roses! But when famous people, who the press tell us are perfect and to be like them, are committing suicide, taking drugs and turning to alcohol to cope…can we really expect our lives to be perfect?
I think what I am trying to say is, do not let society make you feel less because you couldn’t do that load of washing, or you were in too much pain to walk the dog! Be prepared to have days, sometimes weeks even months, when all you can do is rest and do not feel less because you need to just sit.
My best advice is to use a slow cooker and have meals prepared in the freezer, have family help you to do things and do not let anyone ever make you feel less because I know you are fighting every day just to want to get out of bed and some days that is enough!
So this morning I woke up crying, I had slept passed my alarm and my pain was to a point where I was crying. It was so painful literally everywhere that I couldn’t move and I felt sick, I knew I needed my tablets and I knew I had to force myself to eat…not easy to do when you feel like this.
More and more I am finding my pain is breaking through my pain meds, and yes I have tried CBD oil but it makes me drowsy so it would still stop me doing things! When my pain is this bad it is almost impossible to contemplate yoga, and housework or anything other than laying still and trying not to cry.
A couple of weeks ago I had an appointment with a pharmacist to go over my meds and see where I can change things to make the pain relief better. Unfortunately, he said I was on the maximum medications and should not be having much break through pain so if I do to take paracetamol and if that does not help to get a referral to a pain clinic!
I have been to a pain clinic before and they were not very helpful, they said there was not much they could do for me which to be honest was a blow to me. I hate pain, it is so hard to want to do anything when you are in pain all the time. In fact, it makes me want to scream and cry, though I tend to hold it inside because I hate worrying people! Right now I am also having trouble with my ears which is affecting my balance and giving me pressure migraines and both of these things along with my chronic pain make me want to curl up in a ball in bed and never leave!
Now I have had chronic depression since I was 14 years old, and I can tell when my mood is dipping, tearfulness and wanting to hibernate are my biggest tellers and the things I look out for. So right now as I am avoiding talking to my online friends and wanting to be left alone to try to cope with this extreme pain I am trying to look forward, make plans to achieve my goals.
My goal is to be where I was two years ago, back then I was doing yoga, managing to do a little housework, take a shower, walk the dog on a short walk and then rest. This is all I want, so that is where I want to see myself again so I can contribute to keep up with the house, I can look after my doggy, and keep up my exercise.
To get there I am going to see if I can speak to my Dr tomorrow about:
- seeing someone about my migraines
- get referred to the pain clinic
- maybe get myself a referral so I have a specialist overseeing me regularly for my fibromyalgia like I did when my diagnosis was Multiple Sclerosis
Hopefully if these things happen I can start to get myself back to being the person I was and build up my strength, and get myself out of the depression hole I am starting to fall into!
Have you experienced this? Did you get anything out of seeing a pain clinic? What are your goals? I hope to get some advice and tips so leave me a comment.
I am feeling a little overwhelmed and tired, and it is all because I want to be able to be a person a normal person and I want to do things and get things done but my body feels so heavy and painful and tired! I sometimes feel like I am trapped in a body that does not want to do the things I do so it tries to hold me back and stop me from doing what I want to do!
For example, today has been a good day I have done a short yoga sequence, cleaned the bathrooms, had a shower and now I want to write and catch up on things…but now I am in pain in the back of my head, my shoulders and upper back. I also feel so tired I keep having to retype words because my hands will not do what I need them to!
Part of me thinks it would be easier to give up and live in a dump let myself get fat and my brain go numb watching daytime TV!!! However, I am not built that way, I need to learn and grow I need to keep on top of my body which is squishier than I’d like, but I can only do my best right?
So, I know this post is a little moany, but to be honest that is how I feel at the moment! My husband is struggling too I think it is the weather! In the UK right now it is cloudy, hot and the air feels heavy. This kind of weather gives me a lot of headaches and my pain is always worse when the weather is up and down like the typical British summer.
Now, if you read my blog regularly you might be wondering how I am going to get myself back to the positive again????
Well, I have thought long about this and I think I am going to tackle things in smaller chunks! I am going to spread my work out through the day so maybe 10-15 minutes three times a day instead of trying to do it all in one? Also, maybe break down my cleaning even more, so if there are a lot of ornaments in a room, maybe clean it over two days? Yes when pain and fatigue get’s overwhelming it can be easy to give up and yes I have a little weight to lose right now, but if I am patient and keep on fighting I can do this!
Phew it is getting hot here in Britain, something we are not used to and even though we know it is coming we never seem to be prepared for it. I know many people here complain we do not get much of a summer, but when it comes I must admit many of us Brits end up complaining about how stiflingly hot it is!
Today I am in a sundress, something you rarely see, my legs, are on display and I am doing my best to get my jobs done though my pain is bad today. The heat seems to make my hands and feet swell, and I get worse pain everywhere because of it as well as my fatigue making me just want to curl up and sleep!
The main problem which is fatigue, I deal with by going to bed early, taking naps and staying in my living room. We don’t get a lot of sunlight in there because we have a small window, so it is perfect for us migraine sufferers who can find too much bright sunlight will bring on an attack! I also make sure to have my large, tower fan on the go all day sweeping the room in cool air, it really makes a difference and keeps me from melting in the heat.
I also have two more things in my toolbox to help me cope with the summer, I bought them when I first got sick so over a decade ago, so I am afraid I cannot provide links as I usually do. However, they can be found both on Etsy and Amazon if you have a look, one is a scarf with gel inside, and the other is a pillow with the same gel inside a pretty cover. You submerge them in cold water for a few hours and then they can be used to keep you cool, I think you can get clothing as well to keep you cool. A good look online should bring up some good results.
I do not tend to sit outside, but if I do I make sure I am under an umbrella and in the shade, as well as using sun cream so I do not burn. At night I have a tower fan on all night to keep me cool so I do not have trouble sleeping and do not wake up with exacerbated symptoms thanks to being too hot all night!
I hope you all have a lovely summer, please keep cool, wear sunglasses and cream and have a look online there are lots of ways to help us Spoonies keep cool in the summer months.