Studying with ME/CFS

Hello beautiful people! I apologize for being a bit absent lately. I have been extremely busy being a student. I thought I might share with you all how studying is going for me so far.

As some of you know I am studying a diploma in Nutritional Medicine. I am currently half way through the first semester and have started my first set of exams and assessments for each subject, it’s a bit scary. For the term I’m studying four subjects, which isn’t too bad considering some days I may not be well enough to study. I got a shock when I realised two of the subjects I had to study where “Biochemistry” and “Anatomy & physiology”! Ah science and I do not go well! Of course I had panic attack, but I’m up for the challenge!

Three weeks in and I was struggling to get a routine going. I’m not proud but there were tantrums thrown. My brain was not handling the information overload from biochemistry and anatomy & physiology, who knew you needed to know all of this information. I called my special assistance adviser at the college. I was allocated a go too person for extra support if I need it because of my illness. I told her I was struggling with those subjects. She assured me not to worry, she teaches those subjects herself and the majority of students struggle with these subjects. I felt reassured after our chat.

The past few weeks have been challenging, but it is also challenge for other students as well. Being an online student we have weekly forums, this is how the students and teachers communicate. I have posted on the forums with questions about things I’m not sure about or if I’m not quite understanding parts. Other students have commented explaining they feel the same way, which is good to know that I’m not the only one.

I have now managed to get a bit of a routine going and have come up with some tips that will definitely help anybody else who is studying with an illness.

Work at a desk. My first week of study was on the couch, my back seized up and it was off to the chiropractor to get clicked. A good desk and chair will definitely help.

30 Minute stretch breaks. Every 30 minutes I get up and stretch. I found stretches online that people do when they are sitting at a desk all day. It’s a good idea to get movement and to get out of your chair. It’s also a good break if you have a short attention span.

Routine. Find a routine that works for you.

Ask for help.
If you are having trouble understanding something ask someone for help. It can be anyone, a loved one, family member, a friend, your teacher, or a fellow student. They may know your answer or are willing to help you find the answer.

Spread your study out. I was trying to cram my study all in, I struggled to take in all the information and was left feeling exhausted. I quickly realised I have all week to spread it out and do what I can, when I can.

Plan. Plan your study out, mark down all the important dates that you have assignments and exams due. It helps especially if you need time to prepare for them.

You can do it! Yes you can! Keep trying and don’t give into self-doubt.

It is too early to say how I’m going with this term, I will have a good idea once I have completed the mid-term exams and assessments. I sat my first exam over the weekend and passed! WHOOOHOOO! I’m extremely proud of this result. I have found it challenging trying to balance studying as well as my daily routine on top of ME/CFS. This positive result was just what I needed!

Are you thinking about studying? or are currently studying? What are some of your study tips that help you? I would love to hear about them.

Bye for now

Lennae xxx

My text books

My text books


Exercise & Illness

Yoga-Cats-10

When my Doctor first said to me “you have ME/CFS let’s help you start your recovery”. I thought great a magic pill! But instead she said I’m going to refer you to an exercise physiologist, say what! I can barely move what made her think I was going to be able to exercise!!! Pushing that thought aside, I was willing to do it whatever it took! I mean I didn’t want to stay this way so if the Doctor had told me jump of a bridge to get better, then I would have jumped off a bridge. In other words I was going to see this exercise physiologist and give this a go, whatever it took.

I’ve been seeing my exercise physiologist for around a year now and during my first visit she gave me a total of 5 exercises to do. Sounds easy right? She went over the exercises with me and it was a struggle I could barely do them. They were 3 sets of 10 biceps curls using canned tomatoes, they weight about 500 grams, the next was 3 sets of 10 calf raises with one hand holding onto the wall, 3 sets of 5 sit to stands which is basically a squat but you sit instead, 3 sets of 5 pelvic tilts and 3 sets of 10 wall push ups.

I was also given a task of managing a small walk a few days a week. We were living a block away from the beach which was only a 5 minute walk if that, so I made it a mission to walk to the beach. I then would rest for a least 20 minutes and enjoy a chai latte as well as the scenery then walk back home.

At first these were hard and I struggled a lot, I felt a bit worse for a while after doing any of these activities. The only exercises I managed consistently were the bicep curls and the calf raises, occasionally I would do the others. The walk got neglected a little so I would have people over and they would walk with me until I was able to go by myself. Eventually I got a routine happening, the first day I walked by myself an elderly man with a walking stick over took me, I was not impressed.

Fast forward through the months to now and my walk is at a faster pace, I’m now walking 20 minutes at a good pace without a rest. I can now walk around places and stand for longer periods. I don’t feel as weak anymore, I’m starting to feel a lot stronger. I can manage a lot more exercises now and have included stretches as well as some yoga poses. Those tinned tomatoes have now been replaced by 2 kg weights, I’m hoping to replace those soon with 3 kg weights. My squats are real squats with a 2kg weight added.

It has taken a lot of hard work to get to this point, I have faced many setbacks but I have tried to keep up a routine and have been consistently keeping at it. I now feel refreshed and energised after doing any exercise activity. When I first became unwell I was unable to manage any activities. When I was given these exercises it became a goal and something to focus on. I am now able to manage so much more in my days. I think that exercise is to thank for that, it has helped me gain back strength and has given me good baseline for my energy.

If you are suffering from an illness and feel that exercise might help you, I highly recommend seeing an exercise physiologist. It can be a good place to start.

Bye for now

Lennae
xxx

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Escaping to the Blue Mountains

I was lucky enough to escape to the Blue Mountains with Cameron this past weekend. It was so good to go away for the weekend like normal people.

The main reason for this little weekend away was to visit the Japanese bath house Sparadise. Lately I have been craving hot pools and spa baths, I guess coming into winter and feeling the cold would do it. I haven’t spent a lot of time in the bath at home so this was going to be an interesting experience for me and my ME/CFS.

I’ve been lucky enough to have managed a lot of outings lately, so I knew this weekend would go well. We headed off to the Blue Mountains on the Saturday just before lunch, I managed to do a few light duties around the house before we took off. During the drive I was a bit tried, but knew I would bounce back soon. Unfortunately I should have packed some lunch and left a little earlier so I had enough time to rest, but all good.

The drive was 2 hours, that is my longest little trip to date. 10 minutes before we arrived at our destination we stopped off at the famous pie shop Mountain High Pies. I like to think I’m a healthy eater, I made the mistake of not bringing healthy snacks on hand. Lucky for me Mountain High Pies do all types of pies, vegan, gluten free, sweet, veggie and meat pies! I was spoilt for choice, I picked a vegan satay lentil and chickpea pie! It was delish!

At our Motel we had 10 minutes to spare before moving on to Sparadise, we were booked in a time slot of 3pm – 6pm. I had a quick rest, then off we went on a 40 minute drive to the Bath house. Feeling a bit fatigued, I rested as much as I could during the drive.

Arriving at the bathhouse I was ready to rest and soak my muscles, I had been looking forward to this for a while it was going to be enjoyable. A friendly welcome and we were given a quick tour, then it was into the hot baths.

There were two baths, one was outside and it was 40 degrees. The other bath was inside at 38 degrees. There was a cooling pool as well as a steam room. I tried all of these but I found myself mainly in the indoor poor. After 2 hours I decided that was enough for me. The hot baths were enjoyable but probably not something I would rush back too, I was left feeling more fatigued up to an hour afterwards.

Cameron was determined to catch the all blacks game, a 5 minute drive down the road and we found a quiet pub down in Lithgow. They kindly put the game on for us. I was zoned out during the first half trying to get some life back, then second half it was game on. Lucky for us the pub was quiet and there was only one rugby league game on! All blacks won, but only just…..

The next day I was a bit sore but nothing a hot shower wouldn’t fix. It was extremely fresh outside, there was rain and low cloud. We weren’t going to see a lot out here in the Blue Mountains with that around. We headed out to find some breakfast, we enjoyed that outing at a lovely cafe. After brekkie there was potential of seeing the three sisters. Down at the Katoomba viewing platform the winds were ice cold! This was going to be a quick stop! After nearly getting blown away it was off home.

This outing went really well. I did learn though to make things a little easier on myself, I should definitely prepare healthy snacks for on the road and allow time for much needed rest. Very happy with my recovery from this outing, I’m not suffering too much from it. WINNING!!!

Bye for now

Lennae
xxx

The Three Sisters, Katoomba, Blue Mountains

The Three Sisters, Katoomba, Blue Mountains


Moving Tips

Barry helping with the move.

Barry helping with the move.

Recently my husband and I moved house. My first thought about moving was pure dread. Moving involved hard work! I honestly thought this would set me further back. Was I ready to move? Would I be able to do anything? I just wanted to stay in my own comfort zone, which was on the couch in our small comfortable apartment!

Too many thoughts running through my head. Moving is hard on us all at the best of times, however moving with ME/CFS well that sounds like an extremely hard challenge.

During the move, I surprised myself and ended up managing really well. I came up with a few pointers to share for all other sufferers out there.

Take all the help you can get.
If you have friends or family around ask for their help. Any helping hand will do, it helps take the pressure of yourself and your other half.

Pace yourself.
Avoid any attempts to try and keep up with everyone else. I say this because I wanted to try and keep up with everyone else, in reality you can’t! Keep at your own pace, it may not seem like much but at least you are helping.

Pack early. About a week before we moved I started packing. Everyday I would pack a few boxes up of stuff. Depending on how I was going some days I managed 6 and some only 1. I would pack them up then my husband or family would take the boxes over to the new place. This brings me to my next step.

Move over a week. It worked out that we were still in our old place and we already had the keys to our new place. This gave us a week to move. It is much easier if your other half is unable to get time off work, you have an illness and can’t manage a lot. It gives you more time to be able to do things.

Keep calm. Avoid panicking or stressing. It will all get done eventually. Things always have a way of working themselves out.

Avoid cleaning. I was told to avoid cleaning. The reason being as the chemicals might upset me. I went ahead and ignored this advice, it left me feeling not very good for a few hours. If you want to attempt any cleaning just avoid all chemicals and sprays. The chemicals will probably upset your system as us sufferers are super sensitive to everything.

Rest breaks. Take plenty of rest breaks, only you know when you need them. Make sure you listen to what your body needs.

Don’t forget to eat. Snacks on hand are always helpful. We all need food to keep us fueled, if your helping out make sure you have snacks on hand otherwise you may run out of energy very fast.

Make a list. My very last tip is to make a list of everything that needs to be done for the move. There are a lot of things to do during a move and it easy to forget. Things like getting your mail redirected is a good idea, saves you having to update your address straight away for everything.

If all isn’t going to plan, organise for the couch or bed to be setup first! This is so you can crash out and let your helpers sort it out.

Remember moving is a big thing, a lot of people go through stresses during a move and completely dread moving. Try and look on the positive side of the move. For some of us it might be your first home that has been purchased, moving in with your boyfriend/ girlfriend, a change of scenery, a new area, or starting up a business. A change of scenery can do wonders. I was deep down excited about moving, my husband and I had been living in a small apartment for over 3 and 1/2 years. The past year I knew every single brick in that apartment after spending day and night in it. Our new place has a giant back yard and it is only a 4 minute walk to the mall. I am looking forward to spending plenty of time in my back yard.

Suffering with an illness can put our lives on hold for some time, however we do need to try and live our lives as best as we can. I have just proved to myself that I can do it, which is another massive step in my recovery.

Lennae

xxx
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Living a little……

10176224_10152186628823264_5061633922638061932_nIts official I’m starting to live again! I’m struggling to believe what I’ve recently been up too. It’s like I’ve been hit with new found energy and am managing a lot more which is extremely exciting!

Welcome back life!!

A couple of months ago I was having a bad patch, fast forward a month and now I’m onto a good thing. Lucky for me I’ve had a bit of excitement happen these past couple of months, this new boost came at a great time. I had a few visits and loads of outings to enjoy!

My naturopath kicked it off by giving me some new herbs to try. I started taking them back in April, the day Cameron and I were off down the coast for our little getaway! Fantastic timing! After we got back from our getaway down the coast, I was expecting to pay severely for it but I was in luck I was only knocked down for a day. Yay for me!

I was about to get a taste of what normal life was like again.

A few days later I was lucky enough to catch up with two good friends of mine. I was worried I wouldn’t be well enough for a catch up. In the end the worry was for no reason, I got to spend a lovely couple of hours relaxing and drinking chai latte’s down at the beach. My energy levels where great during the catch up, but after a couple of hours I needed rest. We called it a day, but it was a lovely day. I am so grateful for those few hours. Having this illness really interferes with your social life, sometimes you just don’t have the energy to chat on the phone, catch up in person or even send a message.

Hanging out down at the beach with Jemma & Courtney.

Hanging out down at the beach with Jemma & Courtney.


A few days later my mother in law came over to stay with us from New Zealand which was fantastic! Last time she stayed I was pretty much a vegetable on the couch. This time round I was out and about most days with her. I was able to get out to the airport with my mum to pick up my lovely mother in law Pauline. During her stay I was able to do a little shopping, go out to lunch and dinner, enjoy a few walks. One of my walks was 3 kms, I had walked that without even realising. We even had a big bbq with family over at my mum and dads and I managed well during it. One of the shopping trips was 3 hours I still can’t believe I did that! I even bought stuff!
Pauline, Cameron & I down at the beach.

Pauline, Cameron & I down at the beach.


Towards the end of her trip she was spending the weekend up in Sydney with her sister Taffy who had flown over from New Zealand. Cameron and I wanted to make it a goal to catch up with them both on their last day in Australia. The idea was achievable as long as I took it easy the day before we ventured up to Sydney.

We drove up to Sydney looking forward to the afternoon ahead, it’s only an hour and a half drive from where we live. The sun was out, the temperature was warm and there were no clouds in the sky, a perfect autumn day in Sydney. We picked Taffy and Pauline up and took them to Coogee beach. We spent a lovely hour at the beach walking around having Chai lattes, a quick look in the shops then it was off to the airport. I picked up some of the luggage determined to help. I grabbed the lightest bag which was a good 6 kgs, I was pretty happy to be able to lift that. I walked around the airport like I was normal. We said our goodbyes, and made our way back home. A wonderful afternoon spent with loved ones. The next day I was ok, just a wee bit tired.

At Coogee beach with Taffy.

At Coogee beach with Taffy.


The following weekend was big, it was again enjoyed up in Sydney. I don’t mean big as in a night on Kings cross either! It was a night staying up in Sydney but going to see Urzila Carlson at the comedy store. This outing went really well, I struggled a little at the start just before the show. Cameron, Mum, Dad & I ate out at a pub just around the corner from where we were staying. It was a tad too busy for me, my surroundings were a little crazy and it sent me staring into space for 20 minutes. I tensed right up and then crazy thoughts came running through my head of “I can’t do this.” The pub fizzled out and I become normal again. A quick power rest before the show and I was fine. Tears of laughter summed up the rest of the night! The next day there was no payment of pain, just a quick shop around Ikea then back home to rest. No days of paying with pain and fatigue!!! Hallelujah!!!!

Straight after that lovely weekend it was onto the next big thing, moving house………. Moving house was going to be a huge test, it is hard on the best of us. Well I was determined to do it and survive it. We were moving in five days…..five days straight after my big Sydney weekend. I would have already been panicking if my recovery from each of these past events had set me back a few days but I wasn’t. In all honesty Cameron & I didn’t actually have a lot of stuff and we had a lot of helping hands to help out if we needed. During that week I paced myself and packed up stuff into a few boxes each day. All our helping hands helped out when we needed, and I’m happy to say all went well. I managed to be of some use, packing and unpacking and moving stuff around. The next couple of days I was ok, I just took some much needed rest. But I’m happy to say I wasn’t in pain, I just felt like I had a mild hangover just minus the drinking.

I am so proud of what I am managing at the moment, let’s bring on more! My body is finally healing and getting better! Come on baby let the good times roll…..

Lennae

xxx

Beach beauty  North Wollongong

Beach beauty
North Wollongong


#May12th

May 12th is international Myalgic Encephalomyelitis (ME) awareness day. For me this is a day about raising awareness for my illness. I’m obligated to raise some kind of awareness for my illness, even if I can’t get out and do a lot.

A great way to celebrate and raise awareness for this cause is to wear something blue or purple, have or host a high tea party or donate to the cause. Places around the world are lighting up buildings and homes blue or purple for ME. Some groups are hosting high tea fundraising events. I would love to be able to get out and about, or do a crazy fundraiser, however the reality is I can only get out when I’m well enough and that isn’t as often as I would like. Being around people or busy environments can be extremely challenging as well.

I’m determined to do my bit! Whether I end up having a small high tea party at home or getting dressed up in blue, I will definitely be donating to raise funds for research into my illness. I’m also participating in a blog bombing event with other sufferers that blog. We are all sharing our stories and hash tagging #May12BlogBomb. Keep an eye out on Social media or feel free to join us! If you decide to join in make sure you use one of these awareness hashtags on social media #tea4me #mecfs #spoonies #lightupthenightoz #may12th #meawareness.

People suffer from this illness all over the world, here’s a few figures to show you just how many of us sufferers there are out there;

Australia – 150,000
New Zealand – 10,000 – 20,000
UK – 250,000
USA – over 1 million

The cause of this illness is still unknown by medical professionals. This is why we need to raise awareness and funds to find out more. This illness can happen to anyone, even you! Please help me raise awareness for this horrible illness.

Bye for now

Lennae
xxx

Statistics are from the following websites; https://www.southerncross.co.nz/AboutTheGroup/HealthResources/MedicalLibrary/tabid/178/vw/1/ItemID/196/Chronic-fatigue-syndrome-Tapanui-flu.aspx http://sacfs.asn.au/about/general_info/fact_sheet.htm http://www.meassociation.org.uk/about/what-is-mecfs/ http://chronicfatigue.about.com/od/whatischronicfatigue/a/cfsfactsheet.htm
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A Little Getaway

InstagramCapture_446dce2d-30b6-4f0d-be60-4106f48f2a4a_jpgI was keen to venture outside of our little home, sometimes I feel like a caged animal always stuck inside our house. It was time to have a little getaway for a couple of nights. I was feeling a little scared but at the same time super excited about going away. I was getting out! FREEDOM! Determined to make this happen, hubbie and I jumped onto lastminute.com, and started searching for a good destination.

We were after somewhere quiet, relaxing, close to the beach and not too far to travel. We found beautiful Mollymook, 2 nights down the coast here we come! It was approximately 1 hour and 50 minutes drive. Perfect!
I felt like I was going abroad, I hadn’t been anywhere for almost a year. I had stayed a couple of nights at my parents a few times, but their place was familiar to me It wasn’t out of my comfort zone. Going somewhere new was exciting, yay for a holiday!!!
I started having a lot of questions running through my mind! “What if I’m not well enough and we can’t go, what if I can’t do anything? What if I’m fine, what if I have an amazing time? So many what ifs!!!”

I wasn’t going to know these answers until I tried………Bring it on!!!

Leading up to our little getaway, I started having a few horrible symptoms that lead into a setback. One week before we were to go away I was stuck on the couch feeling, nauseous, extra fatigued and had a strange burning sensation in my stomach and throat. I was struggling to eat and just wasn’t having a good time. Things weren’t looking to good, I was starting to stress and panic I really wanted a little holiday. Setbacks can come and go at anytime. The cause of this one was unknown, I suspect I may have come into contact with some sickness that was going around and it was affecting me very strangely.

Two days before our little getaway things were looking up. I was magically feeling a lot better, I paced myself and started planning for our little getaway. I got some great tips from my spoonie friends online about traveling with an illness. I packed up my little bag a day before hand, and sent hubbie down to stock up on healthy snacks.

The day arrived for our little getaway, I was feeling a little foggy headed, so I took a big shot of my herbs for a pick me up. We dropped our little furbaby Barry off at his grandparents and off we went on the road. It was a good drive down to Mollymook, I was in and out of fatigue but overall it was good. I didn’t feel nervous, anxious or stressed. These are some of the feelings that can come over me when I haven’t been out in a while or going somewhere new.

We arrived at our destination, I had a little freak out and panicked. I gave myself a mental slap and told myself to harden up and relax!InstagramCapture_a68b31db-9ecf-43ce-ac78-cf68394ca781_jpg

After a rest we strolled down to the beach which was close by. It was a lovely and lazy afternoon, soaking up the warm sun rays. The weather was gorgeous. We strolled along the beach front and had a lot of rest stops. The beach was only scattered with a handful of people. Later on we enjoyed a little drive, read a couple of gossip magazines, got addicted to a game on my phone called 2048 and enjoyed the outdoor spa bath. The water felt so good on my muscles, I felt alive and pain free. We also were lucky enough to have a spa bath in our room. Relaxed anyone?

The next day I was feeling a tad bit sore, thoughts of over doing it were running through my mind. It took me a little longer than usual to get up and get started. I was determined to make a day of it and not let this end my enjoyable holiday. After a little rest we drove to the local shops in Ulladulla I wanted to go shopping and do normal stuff. We browsed through a few shops and bought a few things. It was fantastic. I was slowly running out of steam, every time I would look around I was unable to focus on anything. After an hour and a half of shopping, it was off in the car for a nice drive around.

I honestly felt like this was the best holiday. Everything I was seeing made me feel so lucky and appreciative of everything I had and was able to be doing. I was feeling so grateful that I was able to get out and about, 10 months ago that was the impossible!

Driving around we saw some lovely views of Mollymook beach, the water was so calm and clear. We headed back to our motel for a big rest. My body was becoming pretty fatigued and sore. I swear it’s like being in an old person’s body. Over all I was still surprised that I was still feeling good. After a good rest it was back to the beach this time in my bikini, those poor people on the beach were going to be blinded by my pale skin!

Enjoying the warm sun, feeling the warm sand on my feet was lovely. I wasn’t game enough to swim, but I walked around in the water for a bit. I laid down for a while breathing in the fresh sea air. For a moment I wasn’t a sick person, I felt almost normal.

That evening I knew I had done enough, after another little drive I enjoyed another spa outside then back into the spa bath. The water was lovely on my muscles. The next day I was pretty tired, I soldiered on wanting to enjoy what was left of our little getaway. I was sad to be leaving our little getaway so soon. We stopped off at a couple of places on our way home, I was lucky enough to have a tiny bit of energy to do some shopping.

The next few days I was kind of dreading, I knew that I would pay for pushing myself. Surprisingly I didn’t pay too much, of course I was very fatigued and felt a moment of lowness but that was more from coming back down from a massive high.

I am amazed of how this little getaway made me feel, its the smallest steps that make me so grateful!

Bye for now
Lennae

xxxx
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