Category: ME Awareness Page 11 of 13

I’ve been looking forward to having summer off since last year when my university module ran through summer with no break. But now it’s here I’m finding it hard to adjust. It’s strange not having to study and having time to do things I’m unable to do while studying. You see normally all my energy goes on study so I can’t do other stuff, stuff I enjoy doing.

Now I have the spare time and more importantly energy I’ve been starting to do some of the things I’ve missed out on during studying this past year, or at least planning to do them. So in good old fashion spoonie style, I have created a bucket list for this summer! There’s a variety of things on there from what people would consider everyday activities like painting shelves to going out for the day to local gardens.

I’ve already ticked one thing off my bucket list: shopping in the city centre. I hadn’t been there for months, but earlier this week I managed it. I spent far too much money really but treated myself. But more importantly I walked pushing my wheelchair for a short distance. And by that I mean about 20 steps! That’s progress. Although it was technically too much and I’ve really paid for it since.

Anyway back to adjusting to life without study. It’s proving harder than I anticipated. While studying I knew my limits, I could only do so much study and so much other activity. Now I’ve started to do activities that involve more physical work (and I don’t mean major physical work; just a bit more walking/moving objects etc.) it seems I don’t know what my limits are.

There’s a big difference between the energy it takes to do mental activities like studying, and the energy it takes to do something that involves both physical and mental activity. Well that’s what I’m finding anyway. Physically my body isn’t up to doing what I want to do even though mentally my brain is. The only way I’ve found out that my body isn’t up to it is by actually trying to do things and pushing past my limits.

So now here I am lying on a garden bench writing this. I managed to make it out to the patio to enjoy some of the lovely weather we’re having in England. Some of the things on my list of things to do may have to wait until my next time off, I improve a heck of a lot more or I find someone willing to stand on a stepladder painting for me! But that’s life. I’ll enjoy what I can do, and a bit of enforced rest while I’m able to watch TV can’t be a bad thing during the grass tennis season!!

I thought I’d give you all an insight into another aspect of life with M.E. That is the world of medication and intolerances. Again this is all my personal experience and no doubt other people have different experiences.

Medication
I’ve never been on a lot of medication since getting M.E. I was on strong painkillers (naproxen) for a number of years but after realising they were partly to blame for the spaced out feeling, brain fog and fatigue I was experiencing, with my doctors consent I stopped taking them.

Since then my doctor has been reluctant to put me on any other strong painkillers due to the potential side effects. Instead I take paracetamol and ibuprofen for the pain when I need it. And by when I need it, I mean I only take it when the pain is at its worst; it only ever takes the edge off and I don’t see the point of taking something if it doesn’t really help.

I take a multivitamin most days since my diet is really quite poor, I eat the best I can but some days it’s a real struggle to eat at all so I just eat what I fancy, and not what is healthy. The multivitamin helps boost my weak immune system and means I pick up fewer viruses and infections!

Then there’s Omega 3 Fish Oil. I take this each morning and find it really helps reduce my brain fog and headache for the day. I find it very noticeable if I forget to take this one in particular.

Finally I take an anti-histamine during hayfever season, nothing to do with the M.E. other than the fact it helps reduce the hayfever symptoms and therefore the amount of stuff I have to cope with!

All in all I’m of the opinion that unless something has noticeable benefits I won’t take it. For all I know it might in fact do me more harm than good. I’m not saying this approach is right for everyone, far from it. If my doctor prescribed me something they were sure would help, I wouldn’t dismiss it straight away, I’d give it a try. But what’s the point in taking painkillers that don’t help ease the pain?

Intolerances

With M.E. comes the risk of certain intolerances. In a sense I’m lucky I only have one or two of these. But they do make eating out difficult. Currently I am almost intolerant of alcohol; I can have one or two sips before I start feeling quite dizzy and suffer as a result, so I tend to avoid it.

The more troublesome intolerance I have is fresh dairy and milk proteins. This is a difficult one to explain but I shall do my best. I should say I only found this out by a process of elimination! After eating any fresh dairy products or something with ‘milk proteins’ listed on the ingredients I get quite ill; nauseous, upset stomach and lethargic.

For this reason I now have to avoid anything that is fresh dairy and also have to carefully check ingredients of other products that contain milk. Easy enough I hear you say? Wrong. You see I can tolerate dried milk powder, dried whey powder etc. It is literally the fresh stuff and milk proteins my body dislikes. Although this gives me the benefit of not having to exclude everything that contains milk out of my diet, and means I can still enjoy a nice cup of tea made with dried skimmed milk, and ice cream if made from dried skimmed milk, reading the ingredients of items whilst shopping is not all that easy. Especially since the Allergy Advice will list milk if it contains milk powder or dried whey which I can eat. I have to check the ingredients list for ‘milk proteins’ or ‘proteins from milk’ or however else it could be worded.

When it comes to eating out things are even more difficult. How many dairy free desserts do you see on a menu or even in a shop? How many main courses come in sauces which may contain cream? Or have cheese on them? Sandwiches are most often made with buttered bread or an unspecified margarine which may or may not contain fresh dairy products. If I ask people they do their best to find out for me but even then they don’t always know. If I choose something but ask not to have the dressing/sauce whatever aspect that might contain fresh dairy or milk protein, I can’t always guarantee that special request will be met. There’s always an element of risk when selecting an item off the menu, unless I stick to something I’m sure is fresh dairy/milk protein free.

Parties, barbeques and family gatherings also pose a problem. I don’t like to be troublesome and have to request a dairy free selection but then again I don’t want to make myself ill by unwittingly eating something that contains fresh dairy or milk proteins. So I have to carefully select what to eat from the selection available or take something dairy free to add to the buffet. (Luckily for most family events we contribute something, so this isn’t a problem).

All this makes going out that little bit more difficult. If I really wanted to play it safe I wouldn’t go out anywhere and where’s the fun in that? A food intolerance like this shouldn’t be something that restricts me that much. The rest of the M.E. symptoms do that as it is, why should I let this extra thing restrict the bit of fun I can still have?!

Generally I like this blog to be a positive take on life with M.E. but for me there’s no escaping the reality of this illness and the impacts it has on my life. I choose to focus on the things I still have and can do rather than the things I’ve lost. But I guess for all those folk lucky enough to have little or no idea of what M.E is, me focusing on what I can still do may not show the real impact of this illness. With this in mind I have decided to do a post on the things I can’t do. The stuff I generally avoid focusing on. I don’t like to dwell on what the life of a normal 21 year old is like, it only serves to make me realise all I’m missing out on.

At 21 I imagined I’d be graduating from university, regularly be out with friends, have learned to drive, perhaps even have a job too! But for me that isn’t the case. For M.E. has taken that away from me. I lost my teenage years to this illness and I’m still unable to lead a normal life.

There’s no parties for me, I can’t cope with the noise, the lights, the crowds. Alcohol is almost a complete no go these days, I’ve never been able to drink much but last year’s relapse has left me almost intolerant of alcohol; just a small glass of wine leaves me dizzy.

I rarely go out, and when I do it’s only to local places at quiet times. Again going places when it’s crowded although possible makes me very ill afterwards. I always dreamed I’d rarely be home when I was 21 but instead it’s the total opposite! Much like my teenage years.

This year most of my friends are graduating from university. Something I always dreamed of doing. And it’s something I will do…just not at the ‘normal’ age. I’ll be few years behind them. But I’m lucky I’m able to study at all. At one stage the thought of doing a degree was unimaginable. But thanks to The Open University I’m able to study from home, part-time, making it possible for me to do my degree. Albeit slower than my peers and with a lot more obstacles in my way!

I had always imagined come 17 I’d learn to drive, yet here I am at 21 and I still haven’t managed it. When I was well enough to in 2010 I didn’t have the funds and since then I’ve relapsed and to be perfectly honest even on my better days now I wouldn’t trust myself to drive. It’s a dream of mine to learn in the future, in an automatic since that should make it easier! But for now it’s another thing that’s been put on the back burner thanks to the M.E.

As for a job. Well I always thought even in the early years of being ill, that come 21 I’d be able to have a small part-time job at the very least. I’d be earning a living and able to pay something towards living with my parents (if I hadn’t already moved out). But alas my life took a different direction and I’m unable to work, heck I only just manage to study at times!

And then there’s all the other things almost every healthy person doesn’t think twice about, things that pre-illness I didn’t think twice about either.

• Standing in the shower, even having the energy to shower!
• Washing and dressing.
• Walking unaided.
• Running.
• Trips out.
• Holidays.
• Lifting a kettle or even cup of water.
• Brushing your hair.
• Sitting up.
• Shopping for food & essentials.
• Doing the washing.
• Cooking a meal.
• Enjoying the sunshine.
• Being out in the fresh air.
• No pain.
• No unrelenting fatigue.
• No constant headache, sore throat or brain fog.
• The strength to open a bottle of milk/get the lid off of the toothpaste/open a crisp packet etc.
• Able to tolerate the sound of opening a crisp packet!
• Being able to hold a pen to write.
• Climbing the stairs.

Having to choose between studying or having a shower; washing up or getting changed. These are everyday decisions for me. If I do one I often can’t do the the other. Or I can do the other as well but it will make me very ill in the following hours and days.

I could go on but this really is getting a bit depressing for me. These are things I either can’t do at the moment, haven’t been able to do for a while or are everyday struggles for me. Struggles that often no one sees because they happen behind closed doors. These are things that no healthy person has to think about, they take them for granted. I’m guilty of that too. It’s taken having M.E. for me to realise how precious these things actually are.

At this point I’d like to make it clear that I don’t begrudge any healthy people of all they can do. For making the most of their lives. I admit, I occasionally feel a little bitter and sorry for myself that I can’t do all a healthy person can. Especially if it’s something I dream of doing. But for the most part I’m happy for them. They have the abilities and opportunities I’ve been denied through no fault of my own, and they’re making the most of them. That’s the way it should be.

I don’t want my friends to feel they can’t discuss their lives with me, at times their stories are my only connection with a ‘normal’ life. I don’t blame them for excluding me from events because they realise I won’t be able to cope with it. It hurts a lot to have to turn down an invite to go out because of my health, it hurts more when no one understands why I’ve had to say no. Luckily these times are few and far between nowadays as my friends begin to understand.

I don’t think a healthy person can ever truly understand how hard it is to accept you can’t do things, everyday things, when you have a chronic illness like M.E. but I’d like to think that by writing things like this post, providing an insight into life with M.E. and the decisions that have to be made, things will change. A basic understanding will be had.

As ME Awareness Week draws to a close here I am blogging again, this time not so much an awareness piece (although since this isn’t the normal life of a 21 year old it could be classed as one) but a thank you and an update on me.

First off, I have been amazed by the response to my two ME Awareness posts, THANK YOU for the comments, tweets and shares they are all very much appreciated! Especially the shares which help me in my quest to spread awareness of this debilitating illness. At the request of a few people I will be putting together a post with more tips and tricks that help me in my everyday life as a continuation from my ME-versary post, so watch out for that in the next few months!

And now onto a little update on me…

I’m currently on a bit of a roller-coaster health-wise, well okay it’s not just my health but an emotional one too. Last week someone very dear to me sadly passed away, and although not unexpected it has still come as a bit of a shock to the system. For the most part I am coping pretty well with it, but with the added stress and pressure of a looming exam my M.E. is taking a bit of a battering.

The days are currently spent trying to revise, which is difficult when I can’t seem to focus on anything. But I know I need to get a good part of the revision done before the funeral next week, since I’m predicting a few days of bad health after the funeral due to the effort involved and of course the emotional impact. But my body is free to surprise me and be perfectly fine if it wants (Yes I am an optimist!). Whatever happens I only have a week and a half after the funeral to prepare for my exam, so the more I can get done beforehand the better, just in case I have under estimated the recovery time.

There’s a little more about revision and my latest assignment results available on my study blog.

So for now I may be quieter than normal as I undertake the activities of the next few weeks, but I will update you all as and when I can.

This evening I’m celebrating managing to have bare feet all day thanks to the lovely warm weather we currently have here in Essex. Sounds strange to most people I’m sure but generally I can’t do without socks because my feet will go ice cold and slightly blue in colour.

Anyway, I’m off to spend the rest of the evening resting on the sofa, cos my Friday nights rock like that! As ever feel free to share, comment and tweet.