I have been thinking about how I’ve got to where it am in terms of my health recently as I’ve been writing a speech to deliver to the local WI group about the story of my life, health and how I manage. This has led me to these thoughts:
1 – The first thing I wish I’d started doing earlier is to ask more questions of doctors and other health professionals.
When I was a teenager I didn’t get any advice on how to manage my ME, I was in a wilderness for years with no support, advice or direction as I just got on, adapted my life myself and managed as best as I could. When I was diagnosed with PBC I didn’t ask any questions, I didn’t research the condition and I have only started looking into it recently. I don’t feel that this is massively important at the minute as my liver is still doing well, but I do need to start looking into things for the future so that I know what they are talking about with blood results etc. What I wish I’d done is ask about progression of my condition, to know what could be coming up ahead of me. I also wish that I’d asked what kind of help there is available for me, how I could manage the mental side of dealing with a chronic illness and which groups there are to go to for support and advice.
2 – I wish someone had told me of all of the help that is available!
I had no idea that there was a PBC group, that Liver North existed, that there are loads of support groups online for people with health problems and you can find something that suits you pretty easily. The groups help hugely with answering questions, giving advice, pointing you in the right direction for questions to ask the doctors, for medications to be taking, alternative therapies to try and general support. It can be amazing to speak to people who are in the same situation as you, who you can ask if something weird happens and you want to know if it’s related to your condition or if it’s just something else that you need to investigate. I found out that PBC has stages from these groups. I got a folder with loads of info in from the PBC foundation, and I get a newsletter with updates on the condition, fundraising events and local groups to meet people face to face. I’ve made friends through these groups and value that immensely. However, I have found some of them to be very negative so I’ve taken myself out of them. Sometimes these groups can be used to rant, which is good, actually no it’s great! Sometimes you need to get things out in an environment where everyone will understand you, you won’t be judged and you won’t upset anyone, which you can’t always do with friends and family. I just find that if the group is only used to rant then it’s not the type of environment that I want to be a part of. I like the type of groups where you can have a rant and a moan, people will comment sympathetically, and also with a positive spin, so someone will always cheer you up and make you see something good, or the next post will be about something amazing that has happened to someone. They’re the groups that I like and find a benefit to me.
And it’s not just groups, there’s local charities that can help with claiming benefits, Disability North helped me with my PIP tribunal. The citizens advice bureau can help with things like this as well. There are shops that sell disability aids to help around the house, who knew that kettle tippers existed? I had no idea I could ring my local council and someone would come out and asses me in my home to see what help I needed! An occupational health worker came out, recommended I have a few things, such as a toilet frame, the table I’m using to lean on now and a perching stool. These have been a huge help, I use the toilet frame all the time as its so much easier and better for me than leaning on the sink and getting up sideways! The perching stool helps when I’m putting on make up and doing my hair, I also use it when cooking which makes life so much easier! The table means I can have more things around me when I’m making a nest on the sofa for the day, as well as having a table that slides under the bed to use of I’m having a bed day.
I knew a bit about benefits as I work in a linked industry, but there were things available that I hadn’t heard about. I had no idea about attendance allowance, and I really had no idea how difficult these benefits are to claim. I completed my PIP form with the physio and occupational therapist at work and was rejected without a medical! I had to ask for a reconsideration, then take it to a tribunal before I was awarded anything. I would always advise getting help from a charity or CAB before completing the application forms as the questions do not lead you to answer in the way that they actually asses you. It’s a minefield! Access to work is brilliant and easy to deal with, but very few people know about it, and when claiming ESA (Employment Support Allowance, sickness benefit) no-one properly explains the process, that you have to have a Work Capability Assesment where you will be assessed on whether you can do “any type” of work. From there you can be moved to JSA (Job Seekers Allowance) or put into one of the 2 groups of ESA, the Support group is for people who are unable to do any type of work related activities, (you are assessed under specific guidelines during the WCA and awarded points, the more points determines your group) this normally includes people with terminal health conditions, severe physical disabilities or sever mental health problems. The WRAG is the more common group and means that you have to participate in some work related activities.
Who tells you all these things? Who tells you what to look for and what to ask?
3 – Tell people about your condition.
I’ve kept a lot of aspects of my condition, the symptoms, how I am feeling and what is happening to me to myself. I figured that people wouldn’t want to hear about it, that I didn’t want to bore them, that if I talked about it all the time then they wouldn’t want to spend time with me. I have no idea where these thoughts came from, but I’ve always been really independent and I do have a tendency to just get on with things and not involve other people. When I’m with my friends and family I want to hear about them and their lives, I don’t really want to talk about myself, so that’s what I did. I wish I’d shared more earlier as I think when my condition got worse it scared people. I went from being a moderately healthy, happy person to not being able to move very well and being in loads of pain. As I’d kept a lot of this for myself I think I shocked lots of my friends and family and I think it would have been easier to just have told them more earlier on.
I know a lot of people loose friends when they get ill, I’ve been very lucky and this hasn’t happened to me. Everyone in my life has been amazing, so understanding when I say that I can’t commit to an event as I don’t know how I’ll be, or just having to say no as I can’t fit anything else into my week. They understand and we just rearrange. I now have to do daytime catch ups as I can’t do evenings very often, I’ve had to stop doing energetic activities as I can’t physically manage it. I wish I’d just explained this earlier as it would have made my life a lot easier.
4 – Ask for help
Along with me not wanting to bore people talking about my health, I also didn’t want to ask anyone for help. I hate it and see it as a failure if I can’t do things for myself, so I never asked for help with anything. People offered, I was often asked if I needed anything, if they could do anything to help, and I always said no. It took me not being able to drive to take a friend of mine up on his offer to drive me to doctors appointments. When I had an accident in my car last year I was taken to hospital and it took a lot for me to say yes to my friend and my sister when they said they’d come to the hospital with me. My friend sat with me until my sister got there and then she let me stay with her for 3 days until I felt well enough to go home. That was huge for me, I actually let her get me drinks while I sat and rested, I was totally looked after for 3 days and it was brilliant. I didn’t feel like a burden, which I was worried about, I didn’t feel like I was in the way, which I was worried about. I felt loved and cared for. I often say to people when I’m offering help, or we’re talking about this issue, if I asked you to do something for me would you do it? And how would you feel about it? Would you be put out, annoyed, taken advantage of? And the answer is always no, of course I wouldn’t mind, of course I can do things to help you and it actually makes me feel good to do it. It actually lets your friends and family be proactive in supporting you which can be very important to them. So I’d advise everyone to ask for help when you need it, to accept offers of help graciously, and say thank you profusely.
5 – Don’t be embarrassed by your health
When I first got a walking stick I was a bit embarrassed to go out with it with friends and family. If I was by myself it was ok, but I didn’t want to be judged by the people who are important to me. Taking a step down from management at work was embarrassing, getting a blue badge was embarrassing. Defining myself as disabled was embarrassing. Notice I’ve used the past tense for everything. I can’t control my health, there’s really nothing that I can do to make a huge difference to it, I can use alternative methods to reduce my symptoms and help me a bit, but ultimately I have an incurable health condition which I have to live with. My walking stick makes it easier for me to get about and do the things that I want to do. My nephews find it fun as they can play with it, it also makes my condition visible which is easier to explain and for other people to understand. My blue badge means that I can get out more than I would do without it as I know that I can park near to wherever I want to go. Doing a less stressful and demanding job meant that I started to think about options for myself for the future which I probably wouldn’t have given as much thought if I was still earning my previous salary. So if you can’t embrace the changes to your life, then learn from them, there is absolutely no need to be embarrassed about anything.
6 – Stop fighting against your body
I’ve only started to get better at this since the start of the year and it links in closely with tip 7 – Prioritise yourself which I have been dreadful at doing. If someone asked me to do something or go somewhere then I would always say yes. I would squeeze things in even though I knew I shouldn’t. I would push myself through colds and bugs continuing to work when I should have taken time off. I’d go out and meet friends when I should have stayed at home. I carried on going dancing until I was on the verge of having to take every Thursday off work as I couldn’t get up after dancing on a Wednesday night so eventually I stopped. I justified this to myself by saying that I wanted to experience everything, to have fun, to enjoy myself and not sit in the house being miserable. I think that socialising and getting out and doing things is hugely important for your mental health and if you have physical restrictions then maintaining your mental health is vital, however I do think that you can over do it, and that’s what I tend to do.
I also push myself with things to help myself. I have been doing Pilates exercises with my physio to build up my core strength. I went to classes with her once a week at the hospital, and I was doing them at home every day. Then I’d not be able to do any for weeks and when I told her what I was doing I was told in no uncertain terms to only do it once a week and when I build things up I need to do it very slowly, adding in an extra 10% in a month. My normal attitude would be to add in 100% every week! This leads me to my boom and bust cycle which just doesn’t work! So now I’m booking in time for me. I’m going to a Pilates class once a week and walking 4 lengths in the swimming pool every week. I can increase the swimming very slowly so I’m hoping to be able to swim regularly by the end of the year. Listening to my body is not something that I am good at, and prioritising myself is something I am worse at, so booking in time for me is vital. I’m loving my trips to the gym to use the sauna and the steam room to relax and meditate and feel better for doing this and I’m finally saying no to things with friends and family as I need to make sure that I’m resting and relaxing.
8 – Learn how to rest
Resting for me used to involve watching TV, having a bath or having food with friends. I would class this as resting. In reality I would always be on my phone either playing games or scrolling through Facebook, looking around the house thinking about what jobs I had to do, feeling guilty for not doing things. Having food with friends is lovely and means that I don’t have to cook or wash up, but I’d be out of the house, getting in later than normal thus pushing back bedtime due to my night routine and medications, as well as concentrating on talking, listening and driving home. This isn’t relaxing or resting, so with the help of a psychologist I figured out that the times when my brain switches off and I actually feel restful are when I’m reading (not in the bath as then I worry about drying and straightening my hair) watching a film at the cinema or watching TV or films at home with subtitles (the subtitles mean that I can’t be looking at my phone as I’ve got to watch the programme to see what is going on, I’m loving Spin at the minute) I’m also trying to meditate, I can’t do silent, clear the mind ones as my brain is just too busy, but I’m getting better at the visualisation meditations and try them while I’m in the steam room at the gym so double relaxation.
9 – Make financial plans for the future
Taking a step down at work, reducing my hours and being on sick pay all had a huge impact on my finances. Lots of people with chronic health conditions can’t work, so have to learn to live on benefits. I’ve had to adapt my lifestyle, pay more attention to my outgoings, wish I had insurance for redundancy and illness, wish that I’d saved when I was earning a good salary. But I didn’t, as I didn’t expect to be in the situation that I’m in now. Finances are a huge thing for disabled people to deal with, and it’s not just the loss of income that is a challenge. It’s also having to think about it all. Interpreting information, finding out about insurances, benefits, sick pay and adapting budgets takes a lot of concentration which can be really difficult. Chronic fatigue and chronic pain cause brain fog and an inability to concentrate sometimes. I use most of my mental power to do my job, I find that when I get home after work my “brain has melted” and I just have no idea what I’m reading, so can’t really make decisions on money then, so I try and fit things in at the weekend when I’ve got some energy and can focus for a while, but sometimes I just can’t be bothered, this also causes people to not claim benefits that they are entitled to as it is too difficult and exhausting to do.
10 – Have a plan for the bad days
I try to always have a couple of films that I want to watch, I save up TV programmes for times when I’m stuck on the sofa and I always have a few books that I want to read, some new games on my phone, food in the freezer and some treats in the house for my bad days. I’ve got emergency numbers for people who can drop everything and come to help me, as well as my closest friends who if I asked would pop over with food, medicines, do little jobs or drive me to the doctors. Thankfully my emergency plan doesn’t involve hospitals, but if yours does, then have a bag packed all the time just to make life easier. I’ve always got spare pads for my tens machine, heat lotion and MSM gel, a couple of hot water bottles and heat packs. My prescriptions are pre ordered by the chemist, so I just have to go and get them, I live next door to a shop and I have the number for my neighbour if I need anything. My friends have me on the “find my friends” app on their phones so they can make sure I get to work everyday and they and my sister have keys to my flat in case of emergencies, I can get a telephone appointment with my doctor to discuss how I’m doing and he can decide if my meds need changing or not. I’m all sorted!
I wish that I’d been told all of these things when I first got ill. I wish there was a leaflet or a website to tell you what you need to know about having a chronic illness. I have found this out over years of talking to medical professionals and other people in similar situations. I’d like to thank them all for their help, advice and support and I hope that this helps people when they start out on their journey.