Specialist Appointment About M.E

As I mentioned in my last blog post (here) I went to see a Rheumatologist that I had been referred to about my M.E. It was my first appointment with a specialist about my M.E and I wasn’t too sure what to expect. As soon as I knew they were setting an appointment up for me I started to write down my symptoms in my phone so that I wouldn’t forget something.

At the appointment he asked some general questions, what I did for work, how long had I been sick and then asked about the symptoms I have. He then pressed on different spots on me like a place on my arm and back and asked if each one was tender or sore. They were and some were more sore than others. I then had to lay down on the bed as he moved my fingers, arms and legs seeing how the joints were moving. I also had to try and bend over and touch my toes and place my hands on the floor keeping my legs straight.

After the examination he said that I have Fibromyalgia. He did say though that M.E/ Chronic Fatigue syndrome fall under the same umbrella of Fibromyalgia. He also said that I am hypermobile which means my joints are a bit more flexible than normal.

He went over some treatment things but there was so much to take in. I tried to remember most things. One main thing he said about was graded exercise therapy where I would do some recreational exercise and slowly build up the time I do it for over two years. Something like going for a walk each day even if I’m feeling really unwell. It is something I have heard mixed views on but I am going to try it and talk it over with the people helping me at the moment.

Some other things were.

  • Get into a better sleep routine and get up at the same time every morning.
  • Relax my muscles and sit better when on the computer or iPad.
  • Use a handbag which goes across my body so that I don’t tense my shoulders trying to keep my bag on.
  • Eat meals at a routine time.

My appointment lasted about an hour mum said which was really good I thought. I wasn’t surprised when I heard him say he thinks I have Fibromyalgia as that and M.E are usually linked together. A lot of the symptoms are the same where in Fibromyalgia there may be more pain and M.E/ Chronic Fatigue Syndrome more fatigue. I think I am kinda in the middle in terms of what symptom is more present. I am a little nervous about trying the exercise therapy as I have heard that it doesn’t always work and some people have been made worse. I still think I need to try it though and will see what my doctor and the other people say. I know each person and doctor is different though in what they say and what helps them.

If you have been in a similar situation I would love to hear your experience and any tips you may have.

Love, Me

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Being Friends With M.E

Spoonie friend's

Photo by Continuing With M.E

When you have a chronic illness there is a lot of things that you are no longer able to do. Something that you may have been fine doing before is no longer possible without a struggle of some sort. This can take a toll on relationships and affect the people around you. At one point you were able to do something with them then all of a sudden you can’t. Taking care of your health becomes a priority and I can understand how it would be difficult for the other people around you to come to terms with that. Some people are really understanding and some people don’t quite understand it as much. Losing friends is a real problem for people with a chronic illness and it can be hard to deal with.

I am not someone that has a big group of friends that I can spend time with in person. I only have a few friends that live close that I can meet up with and I try to make the most of it. Having M.E does limit how much I can do though and also makes it hard to make new friends. M.E is really unpredictable so I may not always be able to go out and when I do it would have to be a somewhat light activity so that I don’t crash too much. I also can’t go out regularly and having other forms of communication are important.

I thought I would share some points from my perspective and hopefully it will help those who are well but may have a friend or family member with M.E.

I do actually want to socialise.

Although I am a naturally shy person and like to spend some time by myself I also do want to go out with my friends. It can get frustrating that I can’t do what I used to and I think it’s important that people understand that I still do want to hang out with my friends. While it’s not always possible the desire is still there. It is also nice knowing that I was invited and while I may have to cancel out on plans it’s not because I don’t want to go out but because my body won’t allow me.

Our activities may have to change.

With M.E I get exhausted a lot which means that there will be times where I need to have a break or you may need to do most of the talking. Talking does use energy so if a friend understands that then it is great and helps out a lot. You have to be somewhat flexible with what you do. Ask how they are feeling and what they are able to do that day. It may mean that you need to change a few things but it will be worth it to keep a friendship going.

Try a different form of communication. 

I find it a lot easier to text than I do to talk on the phone. Some of that may have to do with my shyness but if I am talking on the phone for too long it can get tiring and I can’t pay attention as easily. Texting I can lay down and rest while still having a conversation.  Try to keep in contact in other ways because it could be weeks or even months between seeing someone in person.

There will be other things you can do to help your friend with this illness. It will also depend on the person and how bad their M.E is. Some other things may be offering to pick your friend up so that they don’t have to drive or going around to their place to visit instead of going out somewhere if that is possible. It’s about finding out what you could do to help while keeping the friendship strong.

There isn’t always going to be understanding people though and there will be friendships lost but the friends that matter will want to help and try to understand what it is we are going through and how they can make socialising a bit more easier for us.

Love, Me

Being Diagnosed With M.E

Continuing With M.E Blog

As you may or may not know I live with a chronic illness called M.E. It has been part of my life for around 4 years now. Something I want to do is to raise awareness about this illness so today I am going to share my story about how I got diagnosed with M.E. My memory from that time isn’t the best and I can’t remember when or how a lot of things happened but I am going to try my best to remember. I also have a day planner from 2013 that I will use to help me.

How it started.

The moment it all started was when I came down with a common cold. I don’t remember it being anything like a flu but just a cold. It was back in 2012 but exactly when I can’t remember. After catching that cold I never really recovered fully and started to get worse with other symptoms coming on.

What I was doing at the time.

I was working a lot when I got sick as I hadn’t long finished school. In my planner for 2013 I can see that I was working every afternoon during the week from the start of the year and I think that I was also doing the same in 2012 from about the middle of the year. I also picked up more work in the mornings and both of these jobs were working with children. I had a few other hours a week that I worked but I wasn’t working what I would call full time and I had gaps in between each job.

The process.

So as I mentioned above I came down with a cold and never really recovered from it. I think I had seen my doctor about it but can’t remember when or what he said. I do remember booking an appointment to see my doctor and my normal doctor was away so I went to see another one in the same building. He said that I had a sinus infection and gave me some antibiotics for that. I was confused though as I didn’t think I had a sinus infection. The antibiotics didn’t work and I was soon back at the doctors after they had run out. Every other appointment was with my normal doctor. It seemed like every time I went to the doctor there would be a new symptom that I would mention or one that was affecting me more than the others. I had blood tests taken to check for what it could be but everything came back fine. My doctor diagnosed me with post viral fatigue which usually lasts for about 3 to 6 months I think. After the 6 months things were still the same and my blood tests still showed up as being fine. Though it did show that at some stage I had had Glandular Fever but that it wasn’t active(?) now. I was then diagnosed with Chronic Fatigue Syndrome or as I say here M.E. There is two names for the same illness. They can’t do a test for it and because my tests for everything else came back fine and the fatigue had stayed the same for more than 6 months that is how they were able to diagnose it. They have to rule out everything else. I was referred to a medical specialist but because they couldn’t see me within the allotted time they referred me back to my GP. My doctor has always been good and I think I got lucky as I know many doctors aren’t very helpful when it comes to M.E. I think a lot of that is due to the fact that they still don’t know much about M.E and what causes it.

I remember still trying to work through it all. I would go to work in the morning and come home and crash. I would fall asleep or feel really sick and then have to be woken up to go to my other job in the afternoon. I would usually take the child I looked after for a walk for about an hour which didn’t help but it was something that became expected of me. I eventually had to give that afternoon job up which was around April 2013. I also gave up my morning job a while after that as it was becoming too much. It was something I really enjoyed doing though so it wasn’t an easy decision. I was in a lot of pain at the time though and on top of everything else I knew that for my health I needed to cut back on what I was doing. I have never really had a big social life so it wasn’t like I could cut back on that as parties and nights out have always been pretty non existent anyway.

What’s happening now.

There isn’t really anything that doctors can do to help as there is no cure for M.E. They can prescribe things to help manage different symptoms but can’t do anything to fix it completely. I am on something to help me manage muscle pain and to help me get better sleep and I go to the osteopath regularly. I am also waiting to hear back about seeing a medical specialist to make sure everything has been ruled out and there isn’t something else that may have been missed. I doubt there will be as my doctor was very good but it will be nice for myself to know for sure.

Some people recover after years of suffering but don’t usually go right back to how they were before and it still affects them in different ways. Some things may help some people but then someone else might find that it does nothing to help manage their symptoms. It is a waiting game and over time I have been able to get my symptoms under some control and do a bit more than I could a few years ago.

If you have any questions then please leave them below and I will try to answer them as best as I can either in the comments or as another blog post.

Love, Me

Also if you want to share a link to one of your posts please check out my community page here.

A Week With Me

This week feels like it has been pretty full on for me and a lot has been happening. On Tuesday I had an appointment with some people about my M.E, seeing what they can do to help me with managing it better. One thing they mentioned is about going to see a medical specialist to just go over things and make sure nothing has got missed when I got diagnosed. When diagnosing M.E one of the only things they can do is to rule out everything else. So it will be good knowing that everything has been done that can be done. I am a little bit nervous about going though as I am unsure what will happen and what they will say. I always get anxious at those sort of things though and it always turns out ok so I’m sure it will be fine. That’s what I’m telling myself anyway.

Lunch with friends

Photo by Continuing With M.E

I also met up with a friend for lunch this week and we spent some time in town catching up. I really enjoyed it but my body definitely paid for it the next day. I was feeling sore and like a zombie and the fact that I had to go to work didn’t help me rest and feel better. I was able to take my time at work though which was really good. I was at work for about one hour and by the end of it I was starting to feel really zoned out and not able to think or concentrate properly. A few symptoms have been coming back this week telling me that I need to slow down a bit but I still find it hard with knowing when I need to stop and rest as I still want to do things and have a life.

Today I’m planning on resting until I have work tonight. Friday night and the weekend is usually busy for me with work and recovering from work so I know I need all the energy I can get. I hope you all had a good week and I would love to hear what you got up to.

Love, Me

Also if you want to share a link to one of your posts please check out my community page here.

Working With M.E

Working with M.E is a difficult subject. Everyone is affected by M.E differently so what one person can do another person may not be able to. I got diagnosed with M.E at around the age of 19. I hadn’t long left school and was starting to enter the workforce. I had always had some kind of part time job but after I had finished school I was starting to work a lot more as one does after leaving school. I was mainly working in the child care industry with two other small jobs on the side and was really enjoying it. I was able to do two different jobs which gave me a bit of variety while still working with children. I was even looking into doing some more study so that I could become a qualified early childhood teacher.

I can’t exactly remember when I got sick as it is all a bit foggy but I remember getting a cold and never recovering from it. I was still trying to work for a while, coming home in-between jobs to sleep then having mum wake me up so I could go to my next job. It was pretty hard for a while and my symptoms were at their worst then. I eventually had to make the decision to give up the jobs I loved.

I kept the two small jobs I was doing on the side. It’s just a couple of hours a week spread out across a few days but even then I still struggle to keep up with it all. There are times I can’t do all the hours but thankfully the people I work for and with are very understanding. I do find though that there are times when I’ll just be recovering from work for the week when its time to work again. Its also means that my social life is pretty small, though thats the case anyway when living with a Chronic illness. (I think I’ll leave the topic of friends for another blog post though)

Even though it isn’t jobs I particularly love it is still something and I am thankful that I am able to work a little. Hopefully one day I will feel well enough to work more but until then I will keep doing what I’m doing and focus on my health which now is a big thing in my life. Starting this blog is giving me something to do during my days when I’m feeling up to typing and it’s also something that I really enjoy. So while I have lost some jobs doing things I love I have found new things to enjoy.

Love, Me