Well now I was going to be good, I was trying to be good but then things happened…I stopped eating well…I started trying to do a yoga challenge…and my pain flared! When will I ever learn?
It is so hard because I know what I should do, I know it and I have written about it many times so why is it that I fell off the wagon? Me and my husband were left with fatigue and pain after having a take away pizza, and our diets had run into problems we were not eating the things we knew were good for us.
Everyone has good intentions, we all try our best to eat well especially us spoonies who suffer with increased symptoms if we don’t cut certain things out and add other things. We know it and logically we do our best but then all it takes is one night out where you have a pudding and you start to crave the things that are not good for you.
What makes it worse is that eating badly makes you feel worse, and the worse you feel the less you want to stand a cook! I do have a perching stool which I actually got years ago from occupational therapy, but still if the choice is that or ordering in you know what will win and I know it will be bad!
At least the weather has changed though so we can eat more slow cooker recipes which is such a help, and I love that I can just throw everything in when I feel ok in the morning and by dinnertime it is cooked. Yes I do love stews and soups and things like that they are cheap and easy to make and really nutritious because you can throw a ton of frozen vegetables in.
Of course, my diet isn’t all that fell off the wagon… Yoga with Adriene is how I used to do yoga a year or more ago, every day pushing my body and feeling great afterwards. However, with increased pain and the instability of my joints my physiotherapist said I was only to do low impact stuff. I found Sleepy Santosha and was doing well with her spoonie friendly routines and it was keeping me supple without pushing my body too far.
I was doing well until Adriene came out with a new 14 day yoga challenge to get everyone doing yoga, and I thought it won’t be hard she said it is for anyone! I know I know…by day 4 I was in so much pain and so fatigued I ended up having painsomnia and feeling dreadful! These things together and my body was screaming for me to stop.
The moral of this story is, if you know that doing the wrong thing is going to send you into a flare, be good just be good!
Death is something that will touch each and every one of our lives. It pays to develop a healthy relationship to this sad occurrence before it happens, but also give yourself the space necessary to grieve and feel what you need to feel appropriate. When someone dies, it can be hard to force yourself into action. Often, many of us want to retreat to our families. But, in order to show respect to the person we’ve lost, and to try to seek closure on the affair, it’s best for us to respond to tasks, and to be useful despite the sad feelings in our heart.
The main efforts to help soothe your emotional wounds following a death are difficult to enact, but with the right people around you and the willingness to act in an admirable manner, you can do amazing things:
It can be quite stressful to begin thinking about the funeral the moment a relative or friend dies, but unfortunately the longer you leave it, the longer you will wait before that person is laid to rest. Follow their final will and testament to the T. You can achieve this with the help of local funeral directors and estate managers. Planning the funeral respectfully can happen through this lens. Not many people are experts in funeral planning unless they have been through the process previously, so it’s important to ask questions, to check your options, and to ask for help.
There’s no reason to do this all yourself. This task can help you and your family begin to come together instead of withdrawing from the social bond temporarily. If your relative hasn’t stipulated how they would like to be treated after death, consider putting it to a vote for the person’s nearest and dearest, burial or cremation. Sometimes, the choice is obvious due to religious beliefs etc. If you follow how you believe the person would have wanted proceedings to happen, and you express utmost respect, you are doing a good job.
This is not an easy time for celebrations. But you should find a way to. While the death is tragic and the loss will be felt on a profound level, taking the time to remember the good about a person can help you feel comforted, and that will pay loving respect to their memory. Sharing beautiful experiences you shared with that person with the family, or perhaps talking about silly moments you shared together, or moments you both smiled together can help everyone feel a small moment of levity. It can be hard to consider at the time, but someone dying in no way reduces the positive impact they had on the world, even if that impact was in small, humble but sincere ways.
Taking the good allows you to begin rememberance proceedings, and begin to seek closure after time. With the promise to never forget the memory of this relative, you can begin to seek your healing process with the family together, being there for one another, and slowly coming back to your own lives.
Following death, emotions can feel chaotic. With these two simple activities, you can begin to seek closure.
There really are times when the universe teaches us lessons in unexpected ways, like when fatigue reminds me to slow down. For my whole life I have been focused on achieving my dreams and I always have lists and goals of things I want to do every day. I use an app called Planner Pro it is on my iPad and every day I list about 4-5 things I want to get done that day.
I always have my time with God which is when I meditate and pray and I always do some form of yoga and my physiotherapy exercises. On top of that I try to do a little housework and then some work online if I have enough energy and my body allows me!
And there is the problem, my body never lets me and for a while I have been pressuring myself to get everything done by a certain time. It is like I want to prove to myself that I can still be of use to society and it is really stupid when I hear it in my head now as I write this! The problem is society judges everyone by the job they do!
This recently came to the front of things when Geoffrey Owens, who was a star of The Cosby Show, was photographed bagging groceries in a supermarket. Pictures were published of him with the hope of shaming him, which they did for a little while. But then people started talking about how someone working to help their family is a good thing and he even said that whatever job a person has shouldn’t matter because every job has it’s worth and he is right…but what if you are too sick to work?
I don’t know, it kind of feels like we fall through the gaps of society and that really does not sit right with me. I was pressuring myself to be included and to be taken seriously, I mean I always wanted to be a housewife and have a child but I am not a mother and most days I cannot manage to do housework so what am I? Do I matter? These are the worries that kept me pushing myself to get all my jobs done by 5pm and not resting enough.
So the last few days my pain and fatigue have been through the roof and resting, and I have had to slow down but the thing is slowing down aligns much more with my beliefs than trying to fit in with society. I love yoga, mindfulness and taking time to appreciate the moment and what my body and soul needs. So strangely, this fatigue flare has made me slow down and take a breath and change the way I think, when I realised I was doing things wrong I was so thankful to the universe for showing me my mistakes. I needed that reminder, have you ever had something like this happen?
How are you all this week? I do hope that the change in weather is not affecting you all too much? I wish I could say the same, but my fatigue has flared and because of it I have become addicted to the TV show Gilmore Girls which I didn’t watch the first time and must be mad because it is wonderful!
You know it is kinda strange but fatigue is something that I have had for so long I have my ways to battle it and work around it. I have patterns and routines that I have developed over time so that I can usually keep up with life in my own way around the fatigue. However, this last week it flared and I spent many days sleeping in and getting out of bed after 4pm.
This had left me feeling lost and well frankly bored! I sometimes think that when there is a full wishlist of things ready to watch it can be almost impossible to choose something. I think I must have started and stopped a few different shows and movies before changing my mind. So when Netflix, who knows me better than my own mother, suggested Gilmore Girls I thought hey why not?
Now I am a huge fan of 1990’s TV shows so once I started watching I became addicted, it really helped me to not get depressed. Usually when I have times like this, I lay there feeling awful because I cannot keep up on my housework and I start feeling like a failure. But, with this whole new show and all the episodes to watch I didn’t have those thoughts at all.
I guess what I am saying is, it is sometimes the strangest things that can get us through the tough times that chronic illness serves us from time to time. So here I am already on season 5 and loving the music and the fashion and feeling very sentimental, TV shows were just so much more fluffy and light then you know? I mean I do love the influx of Sci-fi and horror shows that seem to be constantly on TV now, but when I am feeling more fatigue than usual I really want something that will give me the warm and fuzzies and I definitely recommend Gilmore Girls.
So what TV shows do you watch when fatigue hits and you need the fuzzies?
Sometimes chronic pain can get to a point where it is getting in the way of the life you want to live. I have dreams and things I want to achieve, but it is starting to feel as if my pain and fatigue are getting in the way.
I have a video I am putting up on my You Tube channel that kind of hits on this point, but basically it is that my spine pain gets so bad by early evening that I want to just go to bed and lie flat. I cannot think straight and to be honest I just feel like rubbish! Remembering the things I need to remember for my psychic course is becoming so difficult and I guess I am worried my illnesses are going to hold me back?
I guess I could be being silly, but it does feel a lot like I am letting myself down does that make sense? I mean should I be pushing through the pain and fatigue? I try my best to so that I can do a little housework and my physio exercises I mean it isn’t as if I get to do much already because of my fatigue and pain you know?
On top of that I still have not been able to see my doctor after getting two new diagnosis! It is frustrating to not be able to see the people who are meant to take care of me you know? I really need my medications reviewing because I have not had them looked at for a while but whenever we call to make an appointment I am either told there are none or given one with the nurse. I was a nurse so I know that she cannot make decisions like changing medications for long term conditions so I want to see my doctor!
Then two weeks ago I was given an appointment at the doctors in our village, it is like five minutes from us and everyone was nice and the doctor was so lovely and helpful and seemed knowledgeable. So now me and Lee are wondering if we should change to that doctor surgery so I can get some better care. After all, my current doctor did say Fibromyalgia was just a ‘dumping diagnosis’ they give when they don’t know what is wrong.
I hope this post makes some sense, and maybe if you can read passed my brain fog and pain addled brain then you could leave me some ideas of how to keep my body going when I am in pain and want to be in bed, thank you.
First of all I am very sorry I did not write a blog post last week, you will soon hear why so I hope you will forgive me. Big things can happen, but we can all cope with much more than we think we can and I have been fighting for contentment while going through something scary.
About a month ago I found a small lump in my armpit, I regularly check my breasts and armpits because you just never know. I was sure this was simply a cyst or something like an enlarged lymph node or something like that. I went to see my practice nurse who, after feeling it and checking my breasts herself, decided I should go to the breast clinic. So right then I went from sure it was just a cyst to worried it could be cancer or something to be worried about.
My anxiety went through the roof as you can probably imagine, thankfully my husband got the day off work to take me and we only had to wait a couple of weeks to be seen. The clinic was so well set up, I saw the consultant, had an ultrasound and both breasts checked by a mammogram in just a couple of hours! They even had beautiful lit up photography to look at while being scanned it was brilliant and I got a glimpse at how the NHS could work.
The problem of course, as most of us chronic illness warriors know, is that for the most part this is not how the NHS works! Most of the time you wait years to even be taken seriously, then you have to constantly explain and prove that you need tests or scans even when you are in so much daily pain and fatigue it is hard to even get out of bed!
I think if I went to see my rheumatologist and he saw me in a couple of weeks and everything you needed was done in one go and you got the answers right away then we would all have much more faith in our medical teams. I came home from my day being scanned, poked and prodded feeling overwhelmed with happiness that my lump was nothing sinister, and really annoyed that cancer gets this sort of treatment while every other illness is met with proving you are not faking…even when I needed my gallbladder removed it took three emergency room visits over a couple of months for me to even be referred to the right specialist!
So I am sat here feeling a little annoyed, not that cancer gets the treatment it does because it needs quick response, but that the rest of the illnesses get put to the back of the line. Since going to that clinic I have been struggling to keep my contentment and to not fall back into depression and frustration. It would be easier to give in, instead I have been turning to crystals, prayer and essential oils to try and keep my mind from being lost to the darkness.
I have struggled with depression for most of my life, but I refuse to let being shown how good medical care can be get me down. No matter what illness we are battling we deserve to be taken seriously from the start and to expect good pain relief and not to have to explain ourselves over and over again! You are just as important as the next person, and you as well as I deserve to find contentment even when we suffer with chronic illness.
I have been sent this infographic by Betterhelp, an online counselling service. I have worked with them before and as you all know from a recent post of mine I suffer with this myself. I think it is incredibly important that people know the signs and symptoms so they can better take care of the mental health of people around them as well as themselves.
So, if you suspect someone around you might have SAD, or you think this infographic describes how you feel please go and check out these articles sent to me by Betterhelp and never be afraid to seek help and the great thing about online counselling is that you can fit it around your schedule.
Just click the picture to be taken to the infographic
The defining factor of having a chronic illness is that it never leaves you. You may go through periods when it isn’t so bad, and also have periods where you suffer more than usual. Therefore, it is incredibly important to know what to do in the harder times as well as the good ones to preserve your energy and health. A topic that you can read more about below.
Do set yourself goals.
One thing that can be useful for those of us with chronic illness is to set goals to work to. Of course, it can help to do this in a slightly different way than others would.
What I mean is that you have goals for the good days where you push yourself a little more, and also targets for the bad days where you do things that are not so strenuous or demanding, and that have more restorative effects.
Don’t ignore the warning signs.
Next, when you suffer from a chronic condition, you get pretty good at recognizing the warning sign of a relapse. However, it’s vital that you always listen to these signs and use them as a message from your mind and body that needs extra care.
In fact, for some suffering from chronic conditions the severity of a relapse can be mitigated by recognizing the warning signs early and seeking out additional medical help.
A particular example of this being addiction, where the re-emergence of the use of the desire to use substances suggests that an additional stint in rehab is necessary to strengthen the patients’ resolve. Something that if caught early enough can prevent a relapse before it has even begun.
Do be compassionate.
Compassion is a vital to skill to have when you suffer from a chronic illness. In fact, I think that it is something that living with this type of condition can teach us to have both for ourselves, and for others.
Of course, it’s not always easy to direct compassion to yourself, especially if you are frustrated, tired, and in pain. Although one thing that can help is to write a statement that reminds you that you are suffering from a condition and that it affects your normal range of function, as this can help you to realize that it is not your fault.
Also, the Buddhist practice of Metta or loving-kindness is an excellent way of developing a more loving heart towards ourselves. You can even find a guided meditation to help you complete the practice here.
Don’t be unrealistic.
Lastly, when you suffer from a chronic condition, it’s important to be as realistic as possible with what you expect from yourself on a day to day basis. Don’t compare yourself to others whether they have your illnesses or not, but learn to be able to feel from the inside where your limits and boundaries are, and be OK with that.
After all, no one else is living your life or has the particular challenges that you have to face. Therefore, by learning to be realistic, you can help yourself live your life to the full, without putting any additional strain on your body and mind.
If you have been following my you tube channel, then you will know that I am currently studying to become a psychic. I have found as the course has progressed however that my chronic illnesses are holding me back and it is so frustrating!
My chronic illnesses are Fibromyalgia, Chronic Fatigue Syndrome, Ehlers Danlos Syndrome, Spondylosis, depression and generalised anxiety disorder. They work together to make my life interesting by not only affecting how mobile I am, but also making my memory bad, giving me fatigue, shaking, numbness…the list goes on.
I have suffered with many of these my whole life but they started to change things mainly when it came to studying. So I could never get good grades in my schoolwork and I struggled in my nursing course because a bad memory means that retaining what I am being taught can be extremely difficult.
Over time when I gave up work and stopped needing to remember facts and figures it didn’t bother me as much. However, I am extremely interested in learning how to be a psychic, I am starting to get into crystals and I am even learning about the moon phases and I am finding that nothing is sticking and it is so frustrating! On top of that I have the bonus gift that studying makes my fatigue worse so I am so so tired all the time. The extra fatigue makes it hard to balance resting with studying and my housework that I try to do a little every day but it doesn’t always work out now.
I also have problems with grounding, this is a meditation practice that protects you and you are supposed to do it every morning and every night. However, on my left side my numbness is worse, so I cannot feel the ground below me and my pendulum will not work on that side. These might not seem like big problems but they are, right now I am looking into how crystals and essential oils can help but while I look into that I find I am frustrated and struggling.
I am hopeful that as I progress it will help my illnesses, but until then have you been a student? How do you cope with the side effects that come with studying and having illnesses that will not stop? Any tips or tricks gratefully accepted.
The summer is here and I am wearing a lovely skirt and a pretty vest top and I should be feeling happy but I am feeling self conscious. I suffered with eating disorders, I look in the mirror and I only see my flabby arms and my tummy that is thin but not at all toned and it makes me feel so deflated. I used to be extremely thin and toned and now my illnesses have worsened and I am struggling to feel any body positivity with my disability!
I see all the adverts with the models with perfect bodies, I watch the you tubers working out in Hollywood; and I feel that pressure on me to eat everything with avocados and to work out in the gym every day! However, I have new diagnoses that mean my neck needs to be protected more and my joined are more prone to dislocation so yoga the way I used to do it has been taken off the table.
Honestly, since I was told this I have found my fitness level has seriously worsened and my body is not as toned and really my pain and fatigue have worsened! To me doing daily yoga is important but I feel a little lost as to how to practice and how to increase my fitness without doing harm.
Now obviously people are probably going to chime in with ‘get a fitness trainer’ however the fact that I can rarely leave the house and the cost that is really not an option. I am kind of left with the option of you tube which is what I have been using but I feel like I am starting all over again and the motivation when my fatigue levels are where they are now and with my pain is so hard to find! I would love to just go for a simple walk, but the weather is hot here right now and I keep having dizzy spells so that is not much of an option for me to do I wouldn’t want to have a fall out on my own!
So am I left looking in the mirror feeling like my outside doesn’t match my inside? That I am doomed to not being able to feel healthy and sexy because I have chronic illnesses? Do you guys think this is what I should just accept or is there another way that I have yet to see or hear about? I would love some input so please leave me a comment, drop me an email, or hit me up on instagram honestly I need some help not feeling like Buddha every time I look at my tummy!
PS. I have been nominated in the WEGO Health Awards for my you tube channel and would love it if you would please click below and consider endorsing me thank you x