How have you all been today? I can't tell you how hard the past few weeks have been for me. There simply aren't the right words that exist in the English language to describe my current daily battle. I said once last week that I feel like something is either going to drop off my body, go off which would be disgustingly smelly or simply fade away...I have felt like I am at times. But I am still here and still plodding on every day.
I am now in a completely different daily routine than I was when I first started this blog in February. Back then I was managing a different work load, sleeping pattern and I didn't have the same knowledge of all my separate component diseases (as I call them) as I do have now. Knowledge is power...someone got that right! The fact that I now have a wealth of knowledge is great but also daunting in its own way. I mean I now know why my body is aching, making me sick, giving me migraines, making my hair fall out and the list goes on and on and on! But what I still don't understand is what happens to my mind throughout the week....going from full power on the Monday to barely able to string a word let a lone a sentence together by the Sunday...oh well there is still so much to learn! So for today I am going to share with you some of the tips I have picked up on over the past few months - sharing the knowledge and the love!
1. Get as much support as you can during each period of change!
When you have a chronic illness change happens on a very regular basis. It can be a change in symptoms, a change in disease activity or a change in your mental health. It is at these times that you need as many friends around you as possible! I have found that having a mix of friends, family and my "Lupie" family as I call them who are all part of the same on line support group..has been the most essential network for me. This mix gives me the empathy, distraction and love that I need to get through each day!
2. Stock up before the winter hits you full force!
This year I have changed my winter wardrobe tactic. I have been getting as many warm and cosy items as I can in an attempt to keep the Raynauds under control and guess what...it has worked! I brought gloves, scarves and jumpers in August/September so that I had them well before I actually needed them. The best bit is that it saved me money too as they are cheaper at this time of year.
3. Don't fight against your body!
This is one of the best bits of advice i could give anyone facing a chronic illness...don't try and fight against what your body needs/wants or is doing. Pain is a prime example of this. Sometimes when you are in extreme pain all you want to do is fight against it leading to you focussing all your energy on the beast and not on trying to control the pain. It can be blinding and it is easy to let it take over, however I have learnt that stressing out about it and worrying about the pain only makes it worse. Instead I have been looking into when I take my tablets to pre-empt the pain from happening and relaxation techniques for when it is at it's worse. It has taught me to live with the pain rather than fight against it.
4. Managing the fatigue through work, rest and play!
One of the hardest things to do by far is to maintain a normal life; I am not even sure if it is possible on any level in reality. However I made the choice this year to keep on working and I have stuck by that decision. I have wanted to do this for two reasons; I love to work as it gives me a structure to my day and secondly I enjoy what I do. With this decision came a chance for me to rethink my entire week - Monday - Sunday - every single day. Not only rethink how I manage the disease fatigue but equally the side effects of the dreaded chemo fatigue. So this is how I have done it.
- As soon as I get home from work I rest and by rest I switch my brain off work completely and go to bed. I eat in bed, watch tv, knit, chat on the phone...whatever it is it happens from my bed.
- I have re arranged my working week so I work 2 days for the time being from home. Now I am lucky I have this option, very very lucky and I have understanding colleagues. This is not an option for everyone but if it is possible for you then it may be looking into. I am more productive than ever before.
- If you are too tired to do something then say NO. This is the toughy, it is not easy to say no to friends and family and the added guilt only adds to overall stress. But sometimes it is the only option. If you need extra rest then that is nothing to be ashamed of. The friends that love you will understand. The thing to mention here is that you do need an outlet for social time too, so see if your friends can come to you for a coffee, or go out for 1 hour instead of two. Moderation is the key.
- Spend your weekends really relaxing. House work piles up, shopping needs doing, you have people to see and when you work you have to fit it all into two days...it's not the easiest thing to do when you have extreme fatigue. I have begun to simply let go of worries about my weekends and truly get the rest I need. I will do the housework in half hour bursts in the afternoons - mornings are given to my bed - I will do a little at a time and if it all doesn't get done, well the world wont end!
- Cut out caffeine in the evenings. This is a biggy, I have cut out all caffeine after 6pm either opting for decaf tea or herbal tea. This has aided my sleep no end and helped my body clock get into a healthier routine. Also I feel like my over active mind is at rest.
This has been the first month where I have had to ask for more help than ever before due to my new medication regime. Some help has been physical, getting dressed or getting out of the house are the ones I usually need help with, whereas some have been emotional....I have had many mornings where I have just broken down completely for no reason and I have need extra emotional support. Asking for help is NOT a sign of weakness, I have come to realize it is in fact a sign of strength as you know exactly what your limits are and you are comfortable in the knowledge of what is best for YOU!
If you find it hard to ask for help, which at some point we all do....I spent years feeling like a burden...then the best thing to do is find people now that are willing to help in times of need. I have different people for different kinds of help...support groups...friends....family...you know who to trust and who will help you without judgement! Ask them if they can be there if you ever need them and I can guarantee the majority will say yes! Sometimes just knowing people are there for you is enough to get you through the day.