For a lot of people, the moment that they discover the news that they have some kind of long-term or chronic illness, it can often feel as though the whole world is crashing down around them. It can make a lot of things feel pointless and as though there’s no real purpose in moving forward at all. Of course, that’s obviously not the case. Long-term illness is far from a death sentence and many people go on to live incredibly happy and fulfilling lives after being diagnosed. However, that doesn’t mean that there aren’t adjustments to your life that need to be made. With that in mind, here are some things to think about in a life after illness.
The boring stuff
One thing that you’ll want to get out of the way as soon as possible is all of the boring legal stuff and other paperwork that you inevitably have to deal with. Whether you’re filing an insurance claim or going through a company like The Specter Partnership to get compensation if you’ve been a victim of malpractice, it can be tough to motivate yourself to deal with any of it. However, doing it as soon as possible means that you can get on with your life without having to have those things constantly hanging over your head while you’re trying to adjust.
For a lot of people, when they get back to their normal life they’re faced with one question: now what? It’s okay to feel a little lost, at least at first. After all, you’re dealing with a big change and it’s understandable that you might expect the rest of your life to reflect that. But the truth is that life goes on no matter what and it’s up to you to try and go on with it. Think about the changes that will be needed in your life but also focus on the things that are staying the same. Before you know it, you’ll feel like things are right back to feeling the way they used to.
Asking for help
No matter kind of situation they find themselves in, there are some people who simply cannot stand the idea of reaching out to anyone in their lives for help. However, doing this is actually one of the bravest things that you can do. There is no weakness in needing help from others and if you refuse to ask for it, you’re just going to end up making your own life a lot harder than it needs to be.
It’s incredibly important to understand that there will almost certainly be days where you just want to hide away and give up. It’s okay that this happens, it’s a natural part of dealing with something as difficult as a long-term illness. The key is to keep your eye focused on the present moment and living every second as well as possible. It’s okay to get knocked down from time to time, as long as you keep getting up again.
Life is stressful, and we can often focus on the negative. Perhaps because of health issues, problems with work, or any event that gets in the way of our happiness, we can take on this ‘glass half empty mentality.’ Instead, we should practice gratitude. Finding ways to stay positive instead of dwelling on the difficulties in life, we should be able to rise above our stresses and think and feel better as a result. It’s not easy, we know, but when you stop and think about it, there is so much to be thankful for. The following are some of our examples, but you may be able to think of more.
- Be thankful for your parents
Our parents aren’t perfect, but then nobody is. Be thankful for what they have taught you, and for the love and care they have shown you in your life. Be sure to tell them too. They won’t be here forever, so before they enter into a care home and leave this mortal coil, tell them you love them, appreciate them, and are thankful for them. Hopefully, your children will do the same to you one day.
- Be thankful for the small things
These are the things we often overlook in the day, but sometimes we should slow down and take notice of them. Examples? Be thankful for the sun and the rain; be thankful for the water from your tap and the other things we often take for granted; be thankful for the daily sounds you hear, from birdsong to the laughter in your child; be thankful for the things that make you smile. Your day is packed with these things, so stop and pause at each and offer thanks for every one.
- Be thankful for life’s challenges
Admittedly, this is the toughest of them all. How can you be thankful for those things that give you stress and a headache? How can you be thankful for the things that could negatively impact your day? It’s not easy, but then you shouldn’t let them get you down, either. Look at these challenges as things that will help you grow. You have dealt with your challenges before, and you will do so again. Sometimes, the obstacles in our life are there for a reason, but by rising above them, you will become a better person. Get help when you need it, of course, but be thankful for those times when you have developed as a result of your hardships.
- Be thankful for your life
God brought you into this life for a purpose, so be thankful to Him. Be thankful for the good things you have done, and the opportunities you have been given. Be thankful for your strengths as well as your weaknesses, as you aren’t supposed to be perfect. Be thankful for what has happened in your life, what is happening today, and what is still to come. You only have one life on this earth, and it’s a precious one. So give thanks today for you!
Keep the thanks coming
There is so much to be thankful for; we need only stop and consider the blessings we have in our life. What about you? Is there anything we have missed? What are you thankful for? Let us know – we will be thankful if you do!
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!
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 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.
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!
Yesterday was a big day for me, I love making new friends and going out, but when you have an anxiety disorder it can easily spiral into something you force yourself through instead of enjoying yourself.
I was going out with one of my best friends to celebrate her getting married, we first went out to learn to make cocktails in a really nice bar, and then to a different place to eat a lovely meal. We went out to a big city close to where we live, but it was still an hour each way on the train and walking from place to place though thankfully they were less than 5 minutes walking from one another.
I woke really early and was ready to go a long time before I needed to be, now this is normal for someone with an anxiety disorder. I was ready early because I didn’t want to make anyone wait or let anyone down. But waiting has it’s own problems because then I have time to worry and make up scenarios in my head. To combat this I watched you tube videos on my ipad, they are perfect because they are short and you can watch them without worrying too much about getting caught up in them.
I bought myself a new dress to help with my confidence as well, and though my dress was 1950s style I felt so pretty in it and not like I stuck out. I think that with a little make up really helped me to feel like I could hide if I felt overwhelmed, but my friend and her friends and family really were lovely and helped me so much! Even when a man in the bar made a comment about me looking like his mother because of my walking stick I managed to shake it off and just have fun!
I made sure as well to have a few drinks and to have fun, but to be careful not to go too far and to drink lots of water as I did so. I had such a fun time, I ate well and the best part was going behind the bar and making actual real cocktails! They all tasted so yummy and fresh and perfect for summer I could have stayed there drinking them all night!
The walking has left me with aching legs, however people walked at my pace and looked after me which I appreciated so much I have been left behind in the past and it does not feel nice at all! I also came home early before I was wrecked (thank goodness for adrenaline am I right?) and got straight into my pyjamas and got into bed.
Today I found my energy so low and my head is aching, my legs hurt, my feet are swollen and itchy, and overall I just want to sleep…but it was so worth it! I think going out with friends is just as important for mental health as meditating and I just wish I went out with friends more often!