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Feels that a diagnosis is in some ways irrelevant because she still has to live with the pain.
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With the diagnosis for the ME, it's always a difficult issue and so, what happened is, I went through a series of tests and basically they looked at issues such as anaemia, thyroid, that kind of thing because, according to the GP that I was seeing at that particular time, fatigue was the primary symptom of ME, whereas I was feeding back the information that fatigue wasn't my primary symptom, pain was my primary symptom, that was what they were looking for to identify a diagnosis.
And, when all my tests came back as borderline, but okay, ME was the solution that they came up with and that was now seven years ago and it's been a difficult issue because I've been living with a label of an illness which is very much misunderstood and, whilst I perhaps am going towards describing my disability as chronic pain, to others if you have a medical diagnosis which says you have ME, people assume that it is fatigue that you have and that.
I'm in a wheelchair on a regular basis, and using crutches on a regular basis, they can't understand that that's actually in relation to the disability that I have. So it's probably not a diagnosis that I'm that satisfied with, even seven years on.
You mentioned that it was kind of irrelevant now to have a diagnosis?
It might seem defeatist to say that I don't need a diagnosis. I guess if I'm honest, it would be nice if I did have an explanation for the pain. I think I feel it's irrelevant in terms of I have the symptoms that I have and I don't think having the diagnosis is going to magically make the symptoms go away.
That's why the diagnosis is not so relevant. Although it's always nice to have an explanation. I think the problem with the diagnosis I currently have is it's an actual form of avoidance of explanation. It's saying, we don't know how to explain this therefore we will call it that. I think that's the thing that's frustrating with my current diagnosis.
My point about relevance is I guess even if somebody was now to point out to me that I have a different diagnosis, I'm still disabled by the pain that I'm in and I don't think that anything is going to magically make that pain go away.
There's going to be no miracle cure and I think I would be naive to expect one. I think the main thing is to be able to accept that pain is part of my life and to carry on with it and to build strategies around it rather than saying well, when it goes away I will do this and I will progress my career and I will live my life to the full because I think you do have to live your life to the full around any illness or problems that you have in your life regardless of what they are. |
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Realises that medication is not always the best for her body, but using it allows her to get on with life.
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I think I'm quite pragmatic about the type of medication that I take in that it does help me do what makes me happy. I try not to think about it too much because I know that it's probably better for my body not to take the strength of medication that I do have to but, at the end of the day, I would much rather be physically able to do a job and actually have a social life, than perhaps have a healthier stomach. It's a question of balance again. |
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When she has a flare up she contacts people to let them know why she might not be in touch.
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Okay. On my worst days the thing that gets me through is thinking that tomorrow is another day. So that's the way I would start off by dealing with the pain that I'm in. The kind of pain is actually a fierce burning sort of a pain on a particularly bad day. It's something that I can't possibly block out of my conscious. It's at the forefront. It's the first thing I think about even when I'm trying to think about something else.
So on those days I guess it is pretty pointless trying to do anything else that will be constructive because it's going to limit my ability and I'll probably have to do the same task again tomorrow or the next day or whenever I'm feeling better. So I then turn my attention to trying to limit the pain that I'm in on that particular occasion. So I will do really simple strategies like keeping warm. I'll often try to have a bath, I'll use my hot water bottles. I will do everything I possibly can to make my life a bit more comfortable and happy.
If I want some chocolate, I'll have some chocolate that day because I've just got to keep my morale up and I have to try and distract my conscious from the way its feeling because if I let myself think about it too much that is self defeating. So I will often call someone just to let them know that I'm having a bad day, so if I'm not in contact they'll understand that that's why because I think it's important to communicate with the people that are central to your day-to-day life. I mean especially with work. I've got to call work to say that I'm not going in. So I'll do that. I'll do that the first, the second thing that I'll do after telling myself that it's only one day and then I will concentrate on looking after myself. |
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Used to live in an area where the GP practice paid for complementary therapies. Advises asking for recommendations from a GP or support group.
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Would you have any advice to somebody else thinking of using an alternative or complementary therapist?
I think in terms of advice for complementary therapy the best thing, from my experience, is to find out as much as you possibly can, both about the therapy that you're looking into and the practitioner that you're thinking about going to. Because the more you know, the more you can then evaluate what's on offer, has it worked for other people?, what's the person like who's going to be treating you?, and all of these kind of things.
I also think, from my experience, it's good to go to a practitioner that's been recommended by somebody that you trust. Obviously we're not all in a position where we have friends with a similar, with a similar complaint to ours but even if you approach a local support group for your disability or a support group that deals with chronic pain, then they may well have resources to direct you to somebody that is going to be helpful.
Because I think the problem with looking in the phone book and picking someone out is you never know how much training they've had and whether or not they're a trustworthy person, which is always important if you're giving them your body, you want to be able to trust them.
Is it something you ever talk to your GP about it?
I've talked to my GP about complementary therapies at great length. My previous GP, whilst I was at university, was fantastic and fully supportive of any complementary therapy that I could think of and wanted to try, and I think I was just particularly lucky there because the Trust that they were part of actually had some budget for complementary therapies and I know that's really unusual. I think also it spoilt me somewhat because, now I've moved to a different area, I talk to my GP about complementary therapies and they think I'm having a laugh really, because they don't have any funds for it and because they don't have any funds, they haven't really spent any time looking into complementary therapy as a viable option.
I think it's unfortunate that NHS Trusts that don't allocate funds to things, don't even investigate treatment options, because sometimes that's all you need, somebody to say that this is going to be helpful, why not explore it. Even if it does cost you money as a patient, to have the recommendation of a GP is a constructive thing. |
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Fought against using mobility aids but now uses a wheelchair or crutches although finds this difficult to explain to some people.
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I use a variety of mobility aids, usually two crutches, one crutch or a wheelchair, depending on the amount of pain I'm in. I know that, the use of these, this equipment has been affected by my spinal complications as well, 'cos it can mean some days that using crutches is not an option, because I can't put that kind of pressure on my spine if I'm in too much pain.
It also means that I rely quite heavily on my wheelchair when I'm working because I'm up and down a lot and I've got a lot of different jobs to do, so I have to conserve my energy to deal with the pain and to deal with jobs in hand, rather than physically getting around. I think when my pain first arrived in a big way, when I first began to think of it as a huge impact on my life, I was prepared to spend all my energy on making it go away and making it not be an issue.
I fought it very, very hard and for a long time not to use crutches, not to use a wheelchair because I thought that was admitting defeat and saying the pain is here to stay and it's going to dictate my life. Whereas I think, after talking with my friends and my family, they made me realise that it was actually a strong thing to do.
It was saying that I'm getting on with my life and these aids are just going to help me do it, they're not necessarily here to stay. There are days where I can walk, there are days where I can't walk at all and I'm in my chair all the time and I think this is, it's a strong thing to say “When I can walk, I will and when I can't, I won't”.
Because it can also be confusing to other people and it means that I do have to explain an awful lot, that my symptoms are primarily pain and that means, when I'm in too much pain, I can't walk and people find it really hard to get their head round the fact that that can change. So I think it's a good thing, just to be able to explain it and to adapt to different situations. |
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Explains that her GP encouraged her to use a wheelchair to help her get on with life.
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How have you found the attitude of the medical professionals to you using the wheelchair and crutches?
The attitude of medical professionals to the mobility aids that I use has been very varied. I originally started using a wheelchair on the recommendation of my GP, this was the same GP that was completely pro-active when it came to alternative therapies. She saw me as a whole person who needed to get on with my life. She knew I was a very determined person and I wasn't going to spend years in bed, because that was my only other viable option.
And so I think, at the time, it was “Start using a wheelchair and get on with your life or not”. So, as a human being, as well as a doctor, she urged me to think about it. I think progressing on from that and the different specialists particularly that I've seen, they can often as “Well if you can walk, why do you use a chair sometimes, I don't understand” and that seems a very strange thing because, as a medical professional, surely they can understand that no patient is going to want to use something that makes their life difficult, because being in a chair does make my life difficult but, in another way, it makes it easier if I can carry on.
But I think the attitude that I've had to adopt is that my pain is so variable that it's a coping mechanism and, at the end of the day, most medical professionals do accept everyone has different coping mechanisms. |
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Feels that going to a special occasion takes military style planning.
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To think about special events actually takes military planning. Everything in my life takes a great deal of planning but for example I recently went to a 60th birthday party, big family do and I had to make sure 6 months in advance when the venue was booked that it was going to be accessible because if there were steps there it would just cause too much pain and I physically probably wouldn't be able to do it. So that was the beginning of the plans.
I also had to make sure that there was going to be comfortable seating when I was there. I had to make sure that there was suitably equipped disabled facilities, somewhere to lie down if I needed a rest during the day because I do find social events particularly where there are an awful lot of people there quite tiring, and I know that although my illness has been called fatigue, chronic fatigue, that isn't my particular symptom.
My particular symptom is the pain but I do believe that pain can cause fatigue, particularly if you are in situations where you have a lot of other stimulus. You have bright lights and lots of noise, perhaps you don't have the seating that you would be used to and you might not be as warm as you might need to be and that makes any kind of social event something to be really considered before you go. I mean I have a lot of friends, I have a very big family and I don't like letting people down but at the same time they know if they invite me to something it's not necessarily a given that I can go.
I think it's an unfortunate side effect of the way that pain affects my life but it's something that I've realised is just the way it is and I'm best to save my energy and my commitment for the really important things that people really appreciate when I make the effort when I go. Rather than I don't have a really hectic social life on the day-to-day basis, but I do make the effort to go to important things such as weddings and birthdays and I have a really great time because I've sort of saved up my energy and really enjoy myself because it is really a special event for me to be there. |
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She realised that moving from University into a job was going to be difficult so applied for work experience through a University mentoring scheme.
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The process of securing work was a very long one for me, because I realised when I went into my final year, which I did over two years so I could study part-time, I realised at that point I would need to start planning to get the experience that I needed because I knew I was going to be at a disadvantage when I went to interviews, because I wouldn't necessarily have experienced all I needed to experience when I was at university because I was concentrating on managing my disability.
So I started to get more involved in things like the student newspaper, mentoring programmes and also to be very pro-active about being on the board of disability groups when I was at university. So my actual job hunting process began two years before I applied for my first job, 'cos I realised, having seen a lot of friends graduate, how important experience is going to be and how little I had.
So that was my initial planning and I then, once I got into the second half of my final year, started attending the careers workshops and media fairs particularly, because I'd decided that I wanted to go into the media, partly because I saw that it would be an opportunity to be freelance, which would fit in very well with the kind of life that I envisaged working for me.
So I attended all of these, becoming rapidly more delusioned, disillusioned, because I was told by many, many people that they couldn't physically employ a disabled person and, in this day and age, it's absolutely shocking to hear those words but I've heard them an awful lot.
Because when I was going to media fairs in particular, they were big events, I needed to be in my wheelchair in order to access them and a lot of media houses are very small, they're small companies, therefore the Disability Discrimination Act will apply to them in a slightly more flexible form and they basically said they couldn't afford to employ me.
That was a very hard thing to hear but, trying to be positive, I then decided the best thing that I could do is to get work experience with the BBC as a really large employer and also one that I knew to be proactive about disability.
So, through a mentoring programme that I was involved with at university, I applied to them, I did work experience for them whilst I was in my final year and I think it's probably a combination of that experience and the determination that I had that secured my final job. |
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She mainly accessed support groups on internet for information and did not want to dwell on the bad things.
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I think the biggest reason I've had to access support groups is to actually get more information. It's not something that I've found particularly relevant to the way that I manage my illness, but it's something I did look to, particularly when I was first diagnosed, for strategies and for actually some physical contact with other people that have been through the same thing as me.
I actually found, after a month or so of being in contact with a couple of different support groups to get a few ideas, that it wasn't something that was going to work for me as a person.
Because I am quite proactive and positive, I don't want to really dwell on the bad things and I found, in some cases, certainly not in all, but in some cases, the support group seems to be about sharing the bad things rather than sharing strategies and good aspects of management of the pain.
So it's something I then decided I would use, take what I wanted in terms of information, but not really give too much of myself to them, because that wasn't the kind of solution that I was looking for.
Most of the support that I've accessed is through the Internet, purely because physical reasons, because when I was actually accessing the support groups I wasn't physically able to leave the house, so I had to use the Internet and I think maybe that did affect the opinion that I've formed of them. |
