Accepting Chronic Illness, not giving in - just accepting that life will be different!

Accepting any chronic illness (or a few, as was my case with M.E , Fibromyalgia and PO.T.S) isn't easy, for many it can be completely overwhelming. Of course, it doesn't help that half of the medical profession, family members and friends often don't believe that the conditions exist in the first place or think that it's 'all in your head'! 

In many cases the people you would have assumed would be there to help and support you should you ever become ill aren't there for you, and are often dismissive of the fact that you are ill, or that there's actually anything wrong with you at all.

I found that accepting chronic illness is like going through the various stages of grief in no particular order and often jumping from one stage to another; shock, anger, denial, sadness, pain, feelings of helplessness, isolation, loneliness, and acceptance.

It makes sense with these illnesses that you go through a similar process to those of someone going through stages of grief after loosing someone You are grieving. Grieving for the person you wanted to be, the life you had, maybe work, hobbies and things you can no longer do, The life you wanted to lead with plans made for the future, you now can't do. It's like the carpet has been swept out from under you and no previous experience in life so far has prepared you to cope with this situation.

Feeling frustrated with yourself and the illness, angry and helpless because there's nothing that you can do to change things and this is not how you want things to be. 

Feeling alone and isolated because no one can help and no one in your life understands how you're feeling!

I think there's a similar path to acceptance for others in your life, whether it's your husband, partner, parents, kids etc. 

They are grieving too in a way, for what they have lost and trying to come to terms with how things are now and how the future and plans made will change because of the illness.

It takes time to come to terms with things, and you need to give yourself the time you need, to let yourself work through things, and let your head process everything.

 It helps that there are plenty of online groups on Facebook with hundreds of people who understand what you are going through because they've been there themselves and many are currently struggling with exactly the same issues! There are also plenty of organisations and charities with information and support.

I found and still do that guilt plays a major role, guilt about what I can't do, what I 'should' be able to do, guilt from other people about what I 'should' be doing. Guilt that I'm not doing enough, not good enough at what I am doing. Carrying guilt isn't good for anyone. An in situations that are beyond our control, there really should be no place for guilt or blame. But they can both be hard to let go of.

I learnt over time that nearly everyone will have an opinion on what you 'should' be doing but just as you do, they need to learn to accept that you are ill. Accept that you aren't doing things because you can't and not because you don't want to. Accept that in order for you to do as much as possible you need to be very careful with what you do and when. Accept that flares can happen and things can unfortunately change suddenly. 

Realise, that giving yourself a hard time for things that are beyond your control (or others doing that to you) isn't going to help you at all - in fact, it will do the opposite and make everything harder!

Everyone reaches acceptance about illnesses at different times and as I mentioned above can go through various parts of the cycle repeatedly. 

I think it's important to remember that your loved ones are also going through a process towards acceptance and you may not all get there at the same time! People cope with grief in different ways. It's important to remember this, and that you and your loved ones may be at different steps in the process. Also like with any grief, it doesn't ever go away - but it does get easier to cope with as time goes on. You won't always feel as bad as you do now.

 Just as there are groups for people with M.E and Fibromyalgia, there are groups, forums and organisations for partners, carers and family of those with the illnesses where people will understand what they are going through too. Resources for these can be found online or accessed through a carers assessment.

The best thing that you can do is try to build a support network, whether that's family, friends, groups online - just people that will be there when you need them! People who understand the struggles you have on a daily basis, because that is there reality too.

Find things that help you cope when you feel like you can't and that will help you to relax; a favourite show, audiobooks, meditation, doing crafts...whatever works best for you. 

Trying to limit the negativity and stress in your life also helps. The people who insisted I wasn't ill - no matter what myself, doctors or anyone else said are no longer in my life. It was a hard decision to make and I still care about them deeply but the relationships and expectations people had of me (due to not understanding my illnesses) were affecting my health too much so, I had to stop being in contact with them. Things improved when I wasn't constantly pretending to be well.

For a long time, I thought that admitting I was ill, admitting that there were things I could no longer do, needed help with or using aids to help was like giving up or giving in to the illness and letting it beat me.

It's not giving up at all - just accepting that life isn't going to go the way you'd originally planned!

 Using aids gave me freedom that I didn't have without them. I didn't want a wheelchair, but the alternative was being completely housebound. I wish I had of accepted using aids sooner than I did. I'd advise anyone unsure of trying something to do it. Others really mostly don't care and if they do, that says more about them than it does about you. Yes you'll get a few looks and possibly strangers being nicer to you but you're also doing what's best for your health and using less spoons by using an aid. Or able to do things you otherwise couldn't. The benefits definitely outweigh the few odd glances you might get or little curious stairs from little children.

You won't necessarily be able to do the things that you had intended but it doesn't mean that you're giving up, quite the opposite in fact - you're just moving on and finding another way to live your life. 

A way forward that works for you and works with your illness. Finding ways to adapt, setting new goals and discovering other ways to accomplish some of the things you'd set out to do in the first place!

Your life isn't over because you've got a chronic illness  - it's just going to be different! 

Getting an M.E Diagnosis.....and how others react!

So you've been feeling as if things are not right for some time, you know that there's something wrong with you. You've been experiencing a host of numerous and seemingly random symptoms. 

Obviously lots of different scenarios and possibilities are running through your head. (Which doesn't really help matters at all!) Finally you make an appointment with the doctor to discuss what has been going on and talk about all the symptoms you have noticed.

 The doctor records what you've said and tells you that they will do some tests to see what is going on.

You wait patiently as you get blood tests done and are sent for an MRI - basically all the tests they do to rule out various possible conditions and illnesses.

 You've waited for the results to come back to the surgery and to see the doctor again, hoping that it's nothing serious, but if it is - that it's something treatable! 

The doctor sits you down and tells you that all of your tests and scans have come back clear, luckily you don't have anything fatal  - you have M.E. M.E? 

Yes, we've ruled out any other conditions or illnesses with the various tests and scans and I can confirm that your diagnosis is M.E!

I felt a short burst of relief when I heard it, it's not a terminal illness, I've not got 6 months left to live, the doctor knows what it is. Thankfully I now finally have an answer to what has been going on with my body for all this time, all of these symptoms now make sense.

 I don't know about others but I grew up as a child with the false ideas that adults knew all the answers (well, you have to learn as you grow up so surely you know everything when you're old?) and doctors know all about illness and how to cure them or at least treat them!

 Sadly, where M.E is concerned most doctors don't know all about it, many know very little about it, some know nothing about it, others deny it's existence completely and they definitely don't know how to cure or treat it!

My G.P told me that he had no information on M.E but the best thing that I could do was to go home and Google it. A strange thing to hear from a doctor. because they generally give out about patients using the internet to search for medical problems 

 I think many people look up one symptom they actually have and then come to see the doctor armed with a list of about 10 conditions that they think they possibly could have!

When most people hear M.E they recognise the name, I remember as a child hearing about M.E and the words 'yuppie flu'. Used widely in the 80's and having been born in 82 it was a term I'd heard quite a few times.

I've a vague memory of seeing something on t.v about it as a young child and thinking it was when people who worked got really tired. So I wasn't starting off with any real knowledge about it at all.

I did as the doctor suggested and looked it up online. It helped, as there were lots of things that had been happening over time that I'd not paid much attention to or would have even thought of that suddenly made sense. 

Products I'd become sensitive to, why I was especially tired after activity, problems finding words, problems with memory, always feeling like I was really low on iron. 

There seemed to be lots to explain symptoms of M.E, but nothing to cure it. I looked into the history of M.E a bit, wondering how people could feel so awful, with so many symptoms and have it compared to flu? Apart from that, my research at that stage pretty much stopped there.

I tried to explain to family and friends that I'd had on going symptoms for a while,  I'd been through various tests and scans to see what was causing all the symptoms and finally got a diagnosis.

 People asked what type of symptoms I'd had? I explained I was always exhausted, rest/sleep didn't make any difference, I'd a lot of pain, headaches. Several people said it sounded awful and asked me what the doctor had said? 

I explained to them that I had a diagnosis of M.E. I was surprised at how many people came out with similar responses. "M.E? That's that yuppie flu thing." "So your just tired?" "That's not a real condition."

I wrongly assumed that like myself they had just heard and understood little about M.E and like myself, if they found out some information about it, they would understand what it is and how the illness affects people. 

I tried to explain that M.E is a neurological disorder and has been classified as such by the World Health Organisation since 1969, it's not a case of 'just being tired'. It causes extreme fatigue, problems with memory and concentration, causes pain, problems with muscles, affects your bladder and bowels etc 

Well, I may as well have been speaking to myself. No matter what was said by me, the World Health Organisation, the NHS, GP etc - there was nothing wrong with me. 

From then on my neurological disorder M.E was referred to as 'aches and pains'! I made several more attempts over time to help them understand but my efforts were wasted and I was regularly asked; "How are the aches and pains today?"

Realising that there was no cure, I had went back to the doctor's surgery and saw several doctors over a period of time hoping that they could help me manage the pain and improve other symptoms I had. 

I was in my early 20's with a young baby, I wanted my life back. The amount of insults, comments and disbelief that I received from various doctors about a medical condition I had been diagnosed with was absolutely shocking!

"There's nothing wrong with you that getting a bit of exercise wouldn't cure" "You're depressed, a good anti-depressant and you'll be fine" "As long as I'm a doctor - you'll be in pain" "You're lying about doing nothing instead of getting up, going out and living your life" "M.E? there's no such thing"

Everything that the doctors were saying to me was wrong. I was active and independent, to the point I'd bust my C-section open 4 days after my baby was born because I didn't take doctors advice and not over do things after having major surgery. 

I was back working within mental health within a few weeks of having my baby. I was studying counselling at the local college and had started a psychology degree online as well as playing in a band. 

When I couldn't sleep I'd spend hours on the dance mat, trying to loose the baby weight waiting for my wee boy to wake up for his feed at night. It definitely wasn't a case of me lying about doing nothing! 

As for being depressed, what could I possibly be depressed about? I'd the most beautiful baby boy, my plans for work a career and a good future for us both were taking shape. 

Everything I wanted was falling into place - the only problem I had was the M.E which was impacting more on my life as time went on and making it harder for me to live my life the way I wanted.

I decided to go back to the GP who had initially diagnosed the M.E. I spoke to him about the problems I was having and the fact that I wanted my life back. 

He was very honest and said that he couldn't treat my M.E but he would do everything that he possibly could to help manage the symptoms. 

I'd also told him that I was having an awful lot of pain and using my arms to try to do a simple task like drying my hair left me feeling like I'd pulled and strained every muscle in my arms. 

He did a lot of poking and prodding at various tender points on my body, asked a series of questions and then told me that he was also diagnosing me with Fibromyalgia. 

When I asked what it was, he told me that it affects  the muscles and caused other problems but like M.E it was not terminal and not curable. 

That it would be dealt with in the same way as M.E - by trying to help manage the symptoms. So off I went, armed with a vast collection of new medications away home to get on with my life!